# Knee Swelling



## newdiagnosis

Anyone had any luck with Stelara for knee swelling? Long story short, my battle with Crohn's began with unexplained knee swelling. 3 years later I have been diagnosed with crohn's. I am currently on low dose prednisone, but am hoping that Stelara would help with my knee swelling. Any thoughts would be appreciated.


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## Maya142

Stelara is approved for psoriatic arthritis, and it should also work for Crohn's related arthritis. 

CCFA has good info about the various types of arthritis associated with IBD. With peripheral joints (such as knees, ankles, elbows etc.), generally the arthritis flares when the Crohn's flares. So if you take care of the Crohn's, the arthritis should follow.

With axial arthritis (when the spine and SI joints are involved), it's a little trickier. It often flares independently of the Crohn's and so you might have to add extra medications to control that.

I would expect Stelara to control your gut inflammation AND joint inflammation. The other options which are approved for many types of arthritis and IBD are Humira and Remicade. Those are generally first-line, Stelara is newer, so it's often used later if Humira/Remicade fail.



> Types of Arthritis
> • Peripheral Arthritis. Peripheral arthritis usually affects the large joints of the arms and legs, including the elbows, wrists, knees, and ankles. The discomfort may be “migratory,” moving from one joint to another. If left untreated, the pain may last from a few days to several weeks. Peripheral arthritis tends to be more common among people who have ulcerative colitis or Crohn’s disease of the colon. The level of inflammation in the joints generally mirrors the extent of inflammation in the colon. Although no specific test can make an absolute diagnosis, various diagnostic methods—including analysis of joint fluid, blood tests, and X-rays—are used to rule out other causes of joint pain. Fortunately, IBD-related peripheral arthritis usually does not cause any lasting damage and treatment of the underlying IBD typically results in improvement in the joint discomfort.


http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

While you are waiting for Stelara, heat and ice might help.

Good luck!


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## newdiagnosis

thank you maya142. You have been very helpful throughout all your posts. I truly appreciate your input and apparent knowledge.


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## mtseeg

You may find this article interesting about ustekinumab (Stelara).   Looks like it shows promise for Crohn's in general.

https://health.ucsd.edu/news/releas...gnificantly-effective-in-treating-crohns.aspx



> "A high percentage of the patients in the study who had not responded to conventional therapies were in clinical remission after only a single dose of intravenous ustekinumab,” said William J. Sandborn, MD, professor of medicine at UC San Diego School of Medicine"


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## newdiagnosis

I hope this works!


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## newdiagnosis

After my initial infusion of Stelara I feel completely fine. Wondering if there was actually any medication in the infusion haha. So any improvement in joint swelling might take up to 6 months???


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## newdiagnosis

I appreciate your help so far! Definitely helps to have this community throughout this process!
 I am two weeks post initial stelara infusion. Currently on entocort 6mg,  pred 5mg, and lialda 2.4mg. I still have knee swelling. I am trying to come off the Prednisone but the knee swelling gets worse. One doctor recommended to get a knee injections whereas another recommended to just continue low dose Prednisone until the stelara starts working. What are your thoughts? I am worried about getting the knee injection because there are risks and I am worried that I might become dependent on the injections.


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## Maya142

My kiddos have had many injections. No issues.

My younger daughter has very severe Ankylosing Spondylitis. She has required repeated SI joint injections - her SI joints are her worst joints. She has both inflammation and joint damage in her SI joints, which means she really does need injections regularly.

But with other joints - it's just been one or two injections over 7-8 years. Her knee for example - she had one injection at diagnosis (she was 12) and another 8 years later (at 20).

Same with my older daughter - she's had 2 sets of knee injections in 8 years.

We have had no side effects with steroids injections. In fact, they are generally considered safer than oral steroids for children with juvenile idiopathic arthritis and are a first-line treatment.

The only thing is soreness after the shot - with some joints it's worse than others for my girls. For example, both my girls found knee injections easy to handle, while hip injections take them longer to recover from. Knee injections mean sore knees for two days -- we use lots of ice and they rest as much as possible. 

My daughters also both say knee injections barely hurt at all - in comparison to SI joint or hip injections which are much deeper joints. 

My girls have also done Prednisone over the years. Low dose does not always work for them. My younger daughter needs at least 15 mg of Prednisone before her joints respond. My older one, who has less severe arthritis, does get better with 10 mg, but any lower and it's not that useful for her.

My younger daughter has developed MANY steroid related side effects from oral steroids - Cushing's Syndrome and now Adrenal Insufficiency. She has bad AS and has been on them a lot, but the side effects have been awful and now I wish we had been even more careful than we were.


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## newdiagnosis

Thank you Maya for the advice. I will probably settle for a knee injection if the stelara doesn't work soon. Reason why I am so hesitant is because I developed a meniscal tear a few months after a knee injection. However that was likely due to long standing knee inflammation before I was diagnosed and was treated systemically. Also it only worked for 2 weeks and I had a large rebound swelling in that knee. Again, this was all prior to diagnosis and prior to systemic treatment.  The good news is that I have been able to keep the Prednisone down to around 5mg to 7.5mg daily.


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## Maya142

We have been lucky and not had any issues so far with joint injections, except soreness after. I would also wonder if inflammation led to your tear - my daughter had a degenerative labral tear in her hip long before we did ANY steroid injections there.

Stelara takes a long time to work - we were told 6 months. Hopefully it will kick in soon, but you may have to be patient (which is so hard when you're in pain!!).

We have never had steroid shots that have just lasted weeks - several months at least is normal for my girls. Generally, they are done with ultrasound guidance (for elbow, hip etc.), but knee shots are so easy that they're done without any guidance.

We find they are a good "bandaid" and calm things down while we wait for meds to work. 

The other thing you can ask about is Voltaren gel. It is an NSAID, but it's topical so less is absorbed by the gut. You'd have to clear it with your GI, but it helps my girls a lot. A rheumatologist or even primary care doc can prescribe it.

They also use knee braces for extra support when they have knee pain - just the OTC kind.


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## ronroush7

Forgive me for coming into this conversation late.  Have you asked your doctor about peripheral neuropathy being the cause of the knee swelling?


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## newdiagnosis

It's not peripheral neuropathy. No symptoms or signs of neuropathy. Also no reason for me to have neuropathy.


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## newdiagnosis

Going to get a knee aspiration and steroid injection tomorrow. haha. Was hoping to avoid this but I guess its the best route. Lots of swelling, and needing to increase my prednisone dosage. If I get the knee swelling under control I can probably come off the prednisone.


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## ronroush7

Wishing the best for you.


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## Maya142

Good luck! We've had lots of success with steroid shots/aspiration.


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## newdiagnosis

Maya142 said:


> Good luck! We've had lots of success with steroid shots/aspiration.


Got it done today. My knee swelled to the size of a balloon, so no other option. I don't know why, but my experience with knee aspirations has been rather painful. It was pretty painful today, almost as if they are jamming a needle into my nerve. Interested to see what your experiences are.


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## Maya142

My daughters were pretty young when they both had their knee aspirations. My younger one was 12, the older one was either 14 or 15 - I can't remember now. 

Knee aspirations do hurt more than just a simple steroid shot into the joint. 

This April, my younger daughter got a steroid shot in her knee (no aspiration) and was shocked at how little it hurt! 

She says she remembers it hurting a lot more the first time and her rheumatologist said it was because aspirations do generally hurt more and the first shot was done with an aspiration.

Both my girls handled the aspirations well - they didn't need any sedation, there were no tears and they were ok within 5 minutes of the aspiration.

M (my younger one) has had lots of other joint injections - SI joints (5x), hip joint (3x), elbow and heel and even her jaw. She has very aggressive arthritis (Ankylosing Spondylitis), and we are still working on controlling it.

Our instructions were walk as little as possible for a day or two after the shot/aspiration, so the steroid stays in the joint.  We also used a lot of ice. No pain medication at all needed.

Both my daughters have had their knees aspirated once - they haven't (so far) needed anymore because we put them on biologics + immunomodulators, 

Good luck!


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## newdiagnosis

Is it pretty common to be on biologic PLUS immunomodulators. Right now I am only on a biologic (stelara)


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## my little penguin

Ds is on a biologics and immunosuppressants 
Methotrexate was added to help with his arthritis when he developed arthritis while on humira 

He is still on mtx when he started Stelara 
Added Celebrex as well


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## Maya142

It depends. Some people manage with just immunomodulators, some people are fine on just biologics and some need both.

A combination is used often in people with inflammatory arthritis. It's usually Methotrexate + a biologic. My older daughter is on MTX and a biologic. My younger one is on a different immunomodulator - Arava - because she has trouble tolerating MTX. Arava does not work for Crohn's though, just for arthritis.

For spondyloarthritis, axial (spinal) arthritis responds best to biologics. For peripheral arthritis, immunomodulators are used first usually - MTX, Sulfasalazine, Arava etc. Then biologics.

Both my girls are also on NSAIDs. My younger daughter has much more severe Ankylosing Spondylitis than she has Crohn's, so her GI is ok with her being on an NSAID.


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## newdiagnosis

I received steroid injections in both knees. About 3weeks later I am feeling that one of my knees is starting to swell again. Shouldn't the steroid injection last much longer than that? Any advice? I am on stelara and low dose prednisone (7.5mg). The good news is that my GI symptoms are controlled, but this knee swelling is becoming very stubborn.


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## Maya142

Remind me what kind of arthritis you have? A knee injection should last longer than 3 weeks. 

I'm just wondering if it's possible you have osteoarthritis in your knees, in which case a steroid injection may not work as well (versus if it was inflammatory arthritis). Did you have MRIs or x-rays done of your knees?

What other joints are involved? What type of arthritis does your rheumatologist think you have?

How long have you been on Stelara?


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## newdiagnosis

I started having knee swelling before being diagnosed with crohn's. However, I had knee swelling for over a year, at which point I developed a meniscus tear and needed surgery(meniscectomy and synovectomy). I am wondering too maybe there is something else going on other than just inflammation but I doubt it. I don't really have any pain, just swelling. the knee has been swollen for so long that there could be quite a bit of degenerative changes going on. I got bilateral knee injections. My right knee is good, with no swelling. My left knee (with previous surgery) seems to be flaring again. Don't know what to do.


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## Maya142

Do you have other symptoms at all? Stiffness in the morning? 

I guess I'm just wondering if this is partially osteoarthritis, because if it is, then steroids won't do much for the swelling and neither will Stelara. 

My younger daughter has osteoarthritis in addition to inflammatory arthritis in her knees. I was shocked when her rheumatologist mentioned osteo - she is only 20!! But her rheumatologist said it's not uncommon to have osteoarthritis even in your 20s, and since she has had inflammatory arthritis symptoms since she was 9 years old, that increases her risk for osteoarthritis.

Her knees tend to swell in the evening - activity makes the pain and swelling worse. Unfortunately, there is not a whole lot they can do for osteoarthritis - they can do injections with lubricating fluid. PT and Tylenol and exercise can help if there is pain. As a last resort, a replacement is done.

I would talk to your rheumatologist - it sounds like you definitely have some osteoarthritis if they are seeing degenerative changes. Ask him or her what you should expect from Stelara and if your knee swelling is related to inflammatory arthritis associated with Crohn's.

Generally, when peripheral joints like the knees are involved, they get better once the Crohn's is under control. Since your Crohn's is responding well to Stelara, that also makes me suspicious about this not being totally inflammatory.

An MRI would tell you if there is active inflammation in your knees or just degenerative changes (damage) from wear and tear. If there is active inflammation, then I'd ask your rheumatologist how long it will take for Stelara to kick in. You may just need to be patient (easier said than done, I know) or you may need a dose adjustment, or you may need a totally different kind of drug - an anti-TNF for example.

You also might want to consider adding something like Methotrexate - it works very well for peripheral joints like knees.

Good luck!


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## newdiagnosis

Thank you for your reply. I had a meniscectomy and synovectomy done in my left knee a year and a half ago. At that point they did not note any degenerative changes (about a year and a half ago). Of course some degenerative changes could have developed over the last year or two. However, they just saw a lot of synovium from the chronic synovitis. I don't have any pain associated with this.  My rheumatologist really wants to start me on anti-tnf, but I am only week 12 on stelara. Is it safe to do another steroid injection? It has only been like 3 weeks since injection on my left knee. My right knee is doing fantastic after injection. Before swtiching to an anti-tnf I think it might be wise to do an MRE and/or colonoscopy do actually determine if the stelara is healing my bowel inflammation (although symptomatically I feel fantastic).


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## newdiagnosis

It seems like the steroid injections only last about 1 month and then I start to notice gradual swelling of the knees. My rheumatologist recommended to switch to anti-TNFs. The IBD doctor says that if the stelara doesn't work in the next month we will probably have to switch to another med. However, the lab work on Stelara came out good (anemia resolved, normal inflammatory markers, iron normalized). What do you all think? This knee swelling is so stubborn. I can only get so many knee injections, since they can also damage the knee. I am thinking of doing the knee injections for another couple months, and if it doesn't resolve I will probably switch.


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## Maya142

We were told at maximum, 3 injections in one year. It's not something you can repeat monthly.

If it were my kiddo, and you didn't have knee pain in addition to the knee swelling, then I'd wait another month or two to see if Stelara is working. It sounds like it's definitely helping your IBD if labwork and anemia have normalized and you don't want to go through biologics too quickly because there aren't that many.

If your knees remain swollen in a month or two, then I'd try an anti-TNF.


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## newdiagnosis

Thank you Maya! Yes, that is my plan. It is the 3rd month after starting stelara. I am very happy that my GI symptoms are controlled, with good lab work. I am planning to wait this out another 1-2 months, and if my knees are still swollen, I will likely consider anti-TNFs or adding another medication. I really hope the stelara works, since it is very convenient dosing and I have had NO side effects.


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## Maya142

You could consider adding something like Methotrexate or even Sulfasalazine. But those typically have more side effects (though they are usually mild) than an anti-TNF.

Both my girls need an immunomodulator and a biologic to control their arthritis.


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## newdiagnosis

That is a nice thought Maya. I will have to think about that. Which would you recommend?...methotrexate or sulfasalazine? Sulfasalazine is probaby less side effects?


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## Maya142

Sulfasalazine is supposed to be "milder" - both my girls had side effects with it though. Nausea mostly. It did not work for either of them.

Both girls did respond to MTX. My younger daughter had severe nausea with MTX. There are a LOT of tricks to help with MTX nausea - increasing folic acid, adding Zofran, going from pills to injections or vice versa - but unfortunately, they didn't really help her.  It was really unfortunate because MTX worked REALLY well for her joints.

Later she was switched to Imuran and then Arava.

My older daughter has done great with MTX. She does the shots every Friday night, so she has the next day to relax if she needs to. The only side effects she has are mild nausea (only sometimes) and fatigue. Nothing else. The nausea is not bad enough to warrant Zofran, though she does have it at home.

I would discuss the risks and benefits with your doctor. If you have mild arthritis, then Sulfasalazine might work. But considering it's not responding to a biologic, I'd probably use Methotrexate - it's more effective (in our experience).


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## MaryCherub

A few months ago I suffered with knee swelling / pain too. I started to drink a daily cup of Golden Milk. I made it with: one level teaspoon of turmeric powder, one level teaspoon of ginger powder, almond milk, ghee, black pepper and manuka honey. Pain went away after about four weeks of daily drinking this. You should avoid turmeric with certain medications, but I am not on medication.


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## newdiagnosis

What do you all think of switching to an anti-TNF?


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## Maya142

Honestly, you should discuss this with your doctor.

My girls have been on anti-TNFs for 7-8 years, with no side effects. They both started with Humira. Generally, people who have Crohn's too start with either Remicade or Humira. Remicade is infused and usually works a bit faster than Humira. But both are very effective.

We had no increase in infections even though they were in middle/high school and later college while on these drugs (in combination with MTX or another immunomodulator). 

We were told Stelara is a slow-acting drug and can take up to 6 months to work for arthritis. The arthritis dose (45 mg every 12 weeks) is much lower than the Crohn's dose, but I'd still expect it to take some time to work, even at the Crohn's dose (90 mg ever 8 weeks).

We were also told by MANY rheumatologists that they prefer anti-TNFs for Ankylosing Spondylitis/Spondyloarthritis and they have not had good results with Stelara. 

My younger daughter has very aggressive arthritis which hasn't responded well to anti-TNFs, however, every rheumatologist we have seen has said there is no point in trying Stelara for her - it just won't work.

This may be because she has more severe axial arthritis (affecting the spine and SI joints) than peripheral arthritis (fingers, toes, knees, ankles - anything other than the spine). She has many joints involved including her knees, jaw, ankles, hips, feet but her SI joints and lumbar spine are by far the worst joints for her.

I would ask your rheumatologist and GI what they think, but honestly, if your only symptom is knee swelling and you have seen some improvement with Stelara, I'd give it some more time.


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## newdiagnosis

Thank you Maya for your reply! From what I have experienced all these medications are really trial and error. Everyone responds differently. It's actually nice to be able to discuss this with someone. I'll try to wait it out as best I can, but will discuss adding an immunomodulator vs. starting anti-TNF. I feel that starting an anti-TNF is actually less side effects than adding MTX or Sulfasalazine. Will keep you all updated on this journey. This forum has been a great help! Some day I will try to give back with my knowledge once I am able to quiet down the disease course. Trying to navigate this disease is rather difficult, especially when one has a very fast paced and demanding career.


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## Maya142

For my girls, anti-TNFs had fewer side effects than MTX/Sulfasalazine. However, some doctors will insist on putting you on a low dose of MTX to prevent antibodies with the anti-TNF, so you may end up on both anyway.

It really is trial and error. And with the anti-TNFs, if you don't respond to the first one, that doesn't necessarily mean you won't respond to the second. Or if you respond to one and eventually lose response (usually due to antibodies), then a second anti-TNF might work. 

Good luck!!


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## my little penguin

Ds has JSpA and Crohns
He does not have axial issues that we know of 
He was in humira plus mtx for over 5 years this worked really well for his arthritis 

He recently started Stelara mainly for arthritis 
He has had his first infusion and just had his first injection last Friday 
He still takes mtx and Celebrex 
Plus steroids 
We are slowly seeing improvement
Not as fast as I would like but improving 

He no longer has remicade or humira as an option so we have to wait it out 
That said there are not a lot of biologics so we were told it's better to truely trial the biologics to see if it can become effective 

Good luck


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## newdiagnosis

I read some case reports of patients actually experiencing flares of arthritis after starting stelara (in psoriatic arthritis patients). I think I might be one of the few who might be experiencing worsening arthritis while on stelara. I definitely did not have such recurrent swelling before starting stelara. I have a feeling they will switch me to an anti-TNF pretty soon. It's been 3 months and stelara isn't doing much for my knees.

"my little penguin"- what dosage of prednisone is your child on?


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## my little penguin

He is on 10 mg of pred 
They are also starting ivig as a bridge to get  off pred until Stelara fully kicks in 
Since that could be 6 months and he is at 8 weeks from his infusion

Since he is under 18 every biologic except humira /remicade are very long insurance fights since no others are approved for kids in the US


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## newdiagnosis

If the stelara is working wouldn't you expect at least some bit of improvement before 6 months? I honestly don't see any improvement in my knees.


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## Maya142

It really depends on the person. My daughter took 9 months to respond to Humira but once she did, it worked like magic. In retrospect, I can't believe we waited that long, but like my little penguin said, options are VERY limited for kids.

We did 3 months of Humira at the regular dose (once every 2 weeks and then once every 10 days). When that didn't work, we upped her dose to once a week AND added MTX. That combination took another 6 months to work. 

So it may be that you need a higher dose of Stelara or an immunomodulator. 

It sounds like you have seen some improvement, just not in your knees yet. Since you have seen some improvement, you could ask your rheumatologist if the dose of Stelara could be upped, or you can add something like MTX to give it a "boost."

It is very individual - trial and error for every med. Even if you were to switch to Humira now, you may still need to add MTX or increase the dose or wait a while before you see a response. Alternatively, you may see a good response immediately. There is no real way to know.


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## my little penguin

It took Ds 5-6 months for humira to work 
Even though it only takes 3 months for most to start to work 
Once it did he was great


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## newdiagnosis

Just a little update. Both knees pretty swollen. Had to increase prednisone to 25mg for the next few days. Hopefully will be able to go back down to less than 10. If not I will be more aggressive in adding methotrexate/sulfasalazine, or adding an anti-TNF. Not good to stay on such high doses of prednisone. Very frustrating. It's weird how my bowels feel completely fine, but the knees are angry/inflammed in full force.


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## my little penguin

Hope the higherdose of pred helps your knees
Ds has been on 10 mg of pred for a while (months)
But is one week out from first Stelara injection and just got the good news from rheumo
That his joints swelling has been decreasing from last visit 
He is started by ivig as a bridge till Stelara takes over completely  (infusion today )
But he is also on methotrexate 


Hope you get some response soon


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## my little penguin

Highly recommended ivig as an adjunct medicine 
24 hours later almost all joint pain is gone 
Granted ivig has headaches and flu like symptoms as side effect 
But ...


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## dman2000

ive had crohns for 20 years and have been fairly symptom free for the past 10 years on 6mp. Lately over the past year ive had knee swelling in one knee, now the other. Ive recently been to a rheumatologist and they want to put me on humira for it and they also gave me about 2 weeks worth of prednisone. Prednisone seems to work to get the swelling down but its not a long term treatment and im wary of the humira since ive been on 6mp for years. What other treatment options are there to get rid of the knee swelling?


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## my little penguin

Methotrexate would be an option
6-mp doesn't really treat the joints
Methotrexate treats joints and Crohns

That said methotrexate by itself may not be enough 
It wasn't enough for ds joints
He was on mtx and humira together for years


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## newdiagnosis

I heard humira works well. I am trying Stelara with prednisone. However, I've been on prednisone for a while (around 6 months). Trying to come off the prednisone. If tapering off prednisone doesn't work my options are switching to humira vs. adding methotrexate or sulfasalazine. I think humira is safer the 6mercaptopurine.


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## newdiagnosis

Btw, what are ya'll thoughts about my prednisone usage. I'm kinda getting worried. I've been on low dose prednisone for around 6 months (7mg). But recently have had to increase prednisone to 25 and now at around 15mg. I'm trying to come off prednisone but starting to realize that if I don't add something else to stelara I may not be able to come off it. The only reason I am on prednisone is knee swelling...my GI symptoms are well controlled. I only started treatment for the Crohn's around 6 months ago and started stelara around 3 months ago. At what point should I start changing current treatment?


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## dman2000

Ill give you a brief run down on my history. Ive had Crohns for about 20 years. I was on prednisone and went on 6mp in year 2000 then i went into remission and just stayed on the 6 mp. A few years after that i went off 6mp and had major relapse and ended up having a bowel resection in 2004. I went back on 6 mp and since that time my bowels have been fine no problems. Ive never had any sort of knee swelling or arthritis what so ever until about a year ago, sept 2016, my left knee swelled up. At first i thought i had injured my knee because im a ups driver. I went to my regular doctor then i started seeing orthopedic specialists. Within the past year ive had my knee aspirated 4 times and injected with cortisone, swelling comes back. Been on multiple medrol dose packs, which seem to take the swelling down good. Ive had a bunch of blood work for rhematoid factor and ana, everything negative. Fluid analysis negative. 2 MRIs on the same knee, everything negative only shows knee effusion and synovitis. A couple of months ago i had a synovectomy to remove the synovitis and do a biopsy, which just shows inflammatory arthritis. Ortho doctors dont know why because my knees are mechanically fine. Now both my knees are swelling and my ortho doctor referred me to a rheumatologist. The rheumatologist is telling me humira and thinks this whole thing is from my crohns even though my disease isnt active. I even asked my crohns doctor a couple of months ago about it and he doesnt think its related to crohns because my disease isnt active and he thinks its a separate thing. Now im going back to the crohns doctor to ask them what they think about 6 mp and humira. Everything i read is you cant take 6 mp with humira. Im desperate to get this knee swelling/pain gone its been a huge detriment in life.


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## Maya142

That is something you need to talk to your doctor about, newdiagnosis. 

I will say that my younger daughter has severe, hard to control Ankylosing Spondylitis, and despite always being treated with a biologic + immunomodulator + NSAID, her arthritis was never well controlled so we relied on steroids.

She was on steroids a LOT for the last 5 years or so - I would say about 6 months every year. Usually low doses, but she did go up to 25 mg sometimes and taper down. 

Now she is dealing with Cushing's syndrome, which is miserable and adrenal insufficiency, which can be very dangerous - even life-threatening. 

In retrospect, I wish we could have somehow used steroids less, though I'm sure if we hadn't used them, she would have a lot more joint damage.

But now she is really facing some serious consequences of using steroids so much.

I would say that steroids should be a LAST resort - so when everything else doesn't work and you are in severe pain/unable to function. 

You have options - your rheumatologist could increase your Stelara dose (give it every 4 weeks for example) or could add Methotrexate. I think those are both much safer options than being on steroids long-term.

Generally, most rheumatologists like to exhaust all options with a drug before moving on since there are so few biologics. Since it's only been 3 months, and you can up the dose/add MTX (or both), that's what I'd do before switching to an anti-TNF.

But again, this is something you have to discuss with your doctors.


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## dman2000

newdiagnosis said:


> Btw, what are ya'll thoughts about my prednisone usage. I'm kinda getting worried. I've been on low dose prednisone for around 6 months (7mg). But recently have had to increase prednisone to 25 and now at around 15mg. I'm trying to come off prednisone but starting to realize that if I don't add something else to stelara I may not be able to come off it. The only reason I am on prednisone is knee swelling...my GI symptoms are well controlled. I only started treatment for the Crohn's around 6 months ago and started stelara around 3 months ago. At what point should I start changing current treatment?


 You cant be on predinisone long term. 6 months is a long time. Prednisone is just used to get your symptoms under control and get you to the point that a long term treatment option starts working for you. I cant seem to get any doctors to give me prednisone for more than a few weeks for my knee swelling. Try to get different opinions from other doctors if its not working. My current crohns doctor ive been seeing since 2004. I orginally went to him as a second opinion because the doctor i was seeing at that time wasnt treating me right. The old doctor wanted me to get remicade etc. so i got a second opinion and was told i needed surgery.I ended  up hhaving surgery and it saved my life, i nearly had intestinal blockage from scar tissue. If you dont feel like your treatment is working then it doesnt hurt to get a few opinions on it.


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## newdiagnosis

Thank you all for the input. Will definitely get on it and try to come off prednisone. I'll tell you...Prednisone has helped me out a lot. My knees were like balloons before, so I definitely needed something immediate to work. And also I needed to start treating my Crohn's as I was recently diagnosed. Since I am at the 6 month mark, it's about time to come off it. Luckily I have had no side effects so far from either the Prednisone or stelara.


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## Maya142

Prednisone definitely does work!! We have a love hate relationship with it - hate the nasty side effects and love how well and quickly it works.

Good luck with tapering.


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## dman2000

I just started taking prednisone for my knees and it works great i can feel my swelling go down and knees back to normal. But the problem, i only have a 2 week course and when i stop taking it my knees will swell back up. I would think i should atleast get a months worth to have any effect but they want me to go on humira.


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## my little penguin

Dman2000
Even with. Months worth the swelling will just keep returning until you have a maintenance med treating the arthritis 
Unfortunately 
Btdt with Ds 
Some folks just need biologics even for arthritis 

Ds was on humira plus mtx for over 5 years before he needed to switch to Stelara 
This was through third to 8th grade 
No extra infections or anything 
The constant swelling cycles will just lead to damage 

Ds has damage in his tendons in his fingers from letting inflammation cycle 
Good luck with your decision


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## newdiagnosis

I would have to agree. The swelling will always return when you come off prednisone. The only reason why I am still on prednisone is that I am hoping the Stelara will kick in. So far the Stelara hasn't shown much promise in keeping my knee swelling down. Trying to extend out my prednisone taper. But usually when I go below 10mg of prednisone my knee swelling gets worse. In my case I will wait maybe one more month and then add methotrexate or switch to humira.


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## my little penguin

Newdiagnosis 
Ds is on Stelara as well 
Just starting to wean off 10 mg of pred
But he did get ivig last week 
And is on mtx /Celebrex as well 
Will let you know 
He has only had one infusion and one injection so far


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## Maya142

I have to agree too - the swelling is going to keep coming back until you have got the arthritis under control and that will only happen with medication - either something like Methotrexate or a biologic like Remicade or Humira. 

Prednisone is not a good long-term option because of all the side effects/problems it can cause - weight gain, low bone density/osteoporosis, diabetes, glaucoma, adrenal insufficiency, increased risk of infections etc. It should really be avoided as much as possible.

Both my girls have damage to their sacroiliac joints, hips and knees due to long-term inflammation. 

My younger daughter, who has very aggressive Ankylsing Spondylitis that has been very hard to control, also has erosions in her temporomandibular joints (jaw) and thickened and scarred tendons in many places - elbows, hips, pelvis, heels. She struggles with severe pain and is unable to sit, sleep or walk without pain. The pain comes from both uncontrolled inflammation and permanent damage.

The goal is to prevent permanent damage because while you can replace hips and knees, you can't replace other joints as easily. And, obviously, you want to keep your own joints as long as possible and minimize pain.


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## newdiagnosis

Thank you maya for your input. Bottom line is you gotta get inflammation under control. However, it's also important to weigh the risks and benefits of all drugs. Methotrexate has many side effects too including cancers, hair loss, and "foggy, chemo brain." Sometimes the only way to get the inflammation under control is through prednisone, but important to constantly think and try to come off it asap. In the process of trying to find a good regimen to discontinue prednisone. I am now down to 15mg and starting to see inflammation creaping up again :/


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## Maya142

My older daughter has been on MTX for years without significant side effects. Some mild nausea, some fatigue on the day after the shot. She does the shot on a Friday so she has Saturday to rest if necessary. She has Zofran for nausea and doesn't really need to take it ever.

If you look up MTX side effects online, you see lots of scary stuff because it is used as chemotherapy in MUCH higher doses. The baby doses used in rheumatic or gut diseases have different side effects - nausea is most common, fatigue.

Neither of my girls ever lost hair on MTX. If you do lose hair, then folic acid dose can be upped and that often helps.

MTX is considered a VERY safe drug - it has been used in rheumatology for years and years. It is generally a first-line treatment for kids with JIA who have severe arthritis and cannot just manage on an NSAID. They give it to 2 year olds.

CCFA has a good presentation about balancing the risks and the benefits of IBD meds. I'm sure I've posted it before but here it is:http://programs.rmei.com/CCFA139VL/

This is a presentation given at a Children's Hospital, but much of it applies to adults too: http://media.chop.edu/data/files/pdfs/efficacy-safety-of-treament2017.pdf


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## my little penguin

The side effects for mtx listed are for high dose typically when used as chemotherapy .

Mtx for arthritis is extremely low dose up to 25 mg tops 
Chemo is 500 mg

They have  used. Mtx safely for  many in toddlers with jia 

Good luck


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## my little penguin

http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/methotrexate-for-jia.php


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## newdiagnosis

my little penguin said:


> http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/methotrexate-for-jia.php


Wow. Good to know. That's why I love this forum. I always learn something new. That makes me want to opt for methotrexate low dose instead of cancelling stelara. I am getting a second opinion with another ibd doc today.


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## newdiagnosis

my little penguin said:


> http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/methotrexate-for-jia.php


Just got finished with the appointment. The ibd doc recommended that I switch to humira. The other thought that I had was maybe my Prednisone taper wasn't long enough?


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## Maya142

Are you seeing a rheumatologist? A rheumatologist should be the one making decisions for the arthritis, not a GI. Or at the very least, they should be conferring before making decisions.

Since your IBD is under control on Stelara, it seems like your arthritis flares independently of your IBD and has to be treated as such. So you definitely need a rheumatologist to be making these decisions.

Not saying Humira is a bad choice or anything like that, just that if your IBD is under control, then your rheumatologist needs to be the one calling the shots.


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## my little penguin

Ditto that ^^^^
Also realize you could switch to humira and STILL need mtx which would mean you would lose Stelara for nothing 

Ds needed humira with mtx 

Ds rheumo handles the arthritis stuff and GI handles Crohns
But any med decisions are made jointly 

Since the med choice can affect the two diseases


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## newdiagnosis

Thank you Maya. Yes, my rheumatologist is the one that actually recommended humira. My IBD doc was sorta just agreeing. I decided to seek a third opinion from an IBD specialist given the uniqueness of the situation. Sounds like everyone is on board with the humira. Doesn't sound like they are fans of adding an immunomodulator, as monotherapy with humira might work. Also, it seems like humira is very safe. I was initially hesitant to start humira because I thought stelara was safer, but it doesn't sound like that's true. Both seem safe. And I feel doing monotherapy with humira is safer than adding an immunomodulator. 

The other thought that I had is if I do a very slow, prolonged taper of prednisone. I felt like I tapered rather quickly. 30x3 days, 25x3 days, 20x3days, 15x3days....now on 15m. Maybe if I taper it out verry slowly it might work, but I sorta doubt it?


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## Maya142

That is a relatively quick taper, but honestly, if Stelara isn't controlling the inflammation, then I doubt tapering slower will make a big difference.

That said, I would agree with MLP - you may very well need Methotrexate in addition to Humira. So you could be giving up Stelara for no reason. I know for kids, because there are so few meds available, they like to really exhaust every option before switching drugs - such as increasing the Stelara dose or frequency or adding MTX.

Both Humira and Methotrexate are safe drugs.


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## my little penguin

Wow that is a quick taper
Ds is going down by 3 mg every 2 weeks 
And has gone as slow as 1 mg a month 
Too fast and instant flare


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## newdiagnosis

That is a quick taper. But originally I was on 7.5mg daily, and then my knees flared after starting stelara. My rheumatologist did not want me to be on a large dose of prednisone for a long time.


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## newdiagnosis

That is true. I could be giving up stelara for no reason. However, monotherapy with humira I feel would be safer than stelara plus methotrexate. Even though both are safe drugs, monotherapy with humira (if it works), would be the better option I think.

Ever since starting Stelara, I have had to go up on the prednisone. Before stelara I was on 7.5mg. Now the lowest that I am able to achieve somewhat control is 15mg. You would think that if Stelara was working you would see at least a partial decrease in prednisone dosage.


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## my little penguin

Unfortunately Stelara is extremely slow acting 
And doesn't reach it full potential for up to 6 months .
This was told to us by the GI and rheumo 
 Its stated stopping before then wasn't worth it 

Thaycsaid dial therapy does have risks 
But risks are much higher with imuran/6-mp and biologics 


Standard for artthritis typically is mtx plus biologic for kids with no higher increase of infection 

I agree with you though 
Ds stopped mtx to switch to remicade 
Which after  months he reacted to 
Would that have happened if he was on mtx to stop his body from fighting back 
We won't know 
Same with. Humira 
Did monotherapy for two years which kept resulting in increased dosing 
And wasn't stopping him from progressing to an arthritis dx 
So mtx was added 

The key is finding a med that works
And keeping it working as long as possible 
Sometimes it's not the meds we would have picked but once it works
All is well


Really hope humira will help you

Remember humira takes 3-5 months to be effective so you will abridge of steriods till then 
Typical dose is 40 mg once every two weeks 
But can go as high as 40 ng every5 days 
Ds was on it for over5 years with one year of taking 40 mg every5 days plus mtx 

When will you start humira ?

Syringe is less painful than the pen 

Ask about adding lidocaine to the humira syringe 
It helps with the pain


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## newdiagnosis

Also I've had steroid knee injections on top of the increased steroid dose after starting Stelara I think it's safe to say that stelara isn't doing much for the knees. Lol.


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## dman2000

ive been on prednisone for about three weeks now at 15-20 mgs and its barely controlling swelling and seems to be losing its effectiveness. When i was at 30 mg the swelling gone, then 20 mg it was holding, then 10 mg swelling back. I went back to work this week maybe that triggered the swelling. My rheumatologist also gave me sulfasalazine to go with prednisone. Humira is out because my gi dr wants to keep me on 6mp. Im bouncing back n forth between my rheumatologist and gi dr on treatments to use with 6mp so im maybe looking at methotrexate. Im going back to this gi dr next week to see what he thinks.


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## my little penguin

Dman2000
Ds rheumo is the one who prescribed his humira 
Not GI
Since his artthritis is far worse than Crohns at the moment 
Same rheumo
Now prescribes his Stelara and ivig for his arthritis since humira stopped working after 5 plus years 

Not understanding why your rheumo
Can't prescribe humira for your bad joints 
Sulfanazine is extremely mild for joint issues
We were told by Ds rheumo not to bother 

You can't take mtx and 6-mp at the same time 

6-mp does nothing for arthritis 
Mtx may be enough 
Definitely worth a try 
Ds takes it with his Stelara but also took it with humira for his joints 

He weaned to 4 mg of pred today so hopefully that will go well


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## dman2000

ive been on 6mp for almost 20 years for my crohns and my GI dr wants me to keep taking it but not with humira, its too risky. The 6mp was originally for the crohns, ive only started having the arthritic stuff within the past year. The gi dr doesnt want to take me off it and switch treatments because ive been in remission for so long on it. So right now my crohns is good but this arthritis thing is bad. My rheumatologist is the one that prescribed humira but after looking at the risk i would have to stop 6 mp and my gi dr doesnt want that. If methotrexate is out then im limited on my options if staying on 6mp. The other stuff the rheumatologist uses are Cimzia, and Embrel, not sure if those can be used with 6 mp or its the same thing as humira. Either way right now i need to treat this arthritis since i cant stay on prednisone. i might just have to stop 6 mp.


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## my little penguin

Ok I see
Enbrel can't be used in Crohns patients 
It makes Crohns worse 

You can take methotrexate alone which would work for arthritis and Crohns
You can take 6-mp with any biologic(humira /remicade /cimizia /Simponi/Stelara)
But that has increased risk of lymphoma(t cell kind)
That said 6-mp alone has a high risk of lymphoma 


http://www.crohnsforum.com/showthread.php?t=82597

So your not really avoiding you it since you have been on 6-mp so long 

Or you can do biologic as monotherapy 
Such as humira /cimizia /Simponi/remicade 
And stop 6-mp 
Biologics should cover both Crohns and arthritis 

I know it's difficult managing two diseases 
Ds has three and requires two biologics 
It's a balance 

Good luck 

Tagging Maya142


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## newdiagnosis

Just a little update. I have continued on the stelara, going on 20 weeks. Left knee is doing fine, but right knee is still swollen. Still on 12.5mg prednisone. Tried two steroid tapers. The knee swelling is better, but still persistent right knee swelling on 12.5mg prednisone. I assume that when I taper down the prednisone the swelling in the right knee will get worse. I have tried to give stelara a shot, but I will either need to add methotrexate or switch to humira. Even though the knee swelling is somewhat better, the ultimate goal is for there to be no swelling. What do you all think?


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## Maya142

newdiagnosis said:


> Just a little update. I have continued on the stelara, going on 20 weeks. Left knee is doing fine, but right knee is still swollen. Still on 12.5mg prednisone. Tried two steroid tapers. The knee swelling is better, but still persistent right knee swelling on 12.5mg prednisone. I assume that when I taper down the prednisone the swelling in the right knee will get worse. I have tried to give stelara a shot, but I will either need to add methotrexate or switch to humira. Even though the knee swelling is somewhat better, the ultimate goal is for there to be no swelling. What do you all think?


I would add MTX. It works well for peripheral arthritis and most people don’t have major side effects. My older daughter has been on it for years with no issues.


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## my little penguin

Same here
Ds added mtx to humira fur peripheral joints and kept it when he was switched to Stelara 
He is off all steriods as of last week
But they did increase Stelara to every 4 weeks ( his next shot will be four weeeks out )

Hope your knee swelling subsides soon


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## Maya142

There are also lots of tricks if you do have side effects with MTX - upping folic acid works for many people. Switching from pills to the shot or vice-versa. Zofran if you have nausea. 

My older daughter is slightly tired the day after MTX - that's really the only side effect she has. Occasionally she has some nausea but not enough to take Zofran mostly. She takes it on a Friday night and then takes it easy on Saturday.

Many people have NO side effects at all.

I would try MTX first because you may end up needing it even with Humira. So I would exhaust all the options with Stelara first.

MTX is still a first-line treatment for both rheumatoid arthritis and juvenile idiopathic arthritis. It is also used for psoriatic arthritis and spondyloarthritis when the spine is not involved. It works well for peripheral joints (joints other than the spine).


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## newdiagnosis

Thank you all for this wonderful forum! I would have to agree with you all. I spoke with my doctor. We came to the conclusion that I will try to finish this steroid taper that I am on, and try to extend it out. Previously I was going down by 2.5mg every 5 days or so, which is rather fast. We will try to extend it out to 2.5mg decrease every 7-10 days. I am on 12.5mg daily right now. My knees are actually looking a lot better on 12.5mg (almost no swelling). Only concern is that I have been on low dose prednisone since around April. If the taper does not work, we can try another steroid taper. If that doesn't work then we will add sulfasalazine. If sulfasalazine doesn't work then we will add methotrexate. If all of the above doesn't work then we will switch to humira. I think the stelara is working somewhat, as my GI symptoms are gone, and my inflammatory markers are all down. My anemia resolved. Also, I have no side effects from stelara. I think I will stay the course with stelara and try to make things work. I think I am getting closer and closer to my goal of no knee swelling. I am crossing my fingers that this last steroid taper works. 

I hope you all have a happy holidays.


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## Maya142

That is quite a long time to be on low dose Pred. People are on it for years, but obviously, the less time the better. My younger daughter was on low dose Prednisone for years and is now really facing the consequences - Cushing's, Adrenal insufficiency, low bone density and metabolic changes due to long-term steroid use.

Also, most endocrinologists do not consider 12.5 mg low dose. Low dose is definitely under 10, preferably between 3-5 mg according to our endocrinologist.

Why not just try adding Sulfasalazine or MTX now? It sounds like you have tried steroids and they work, but they're not really a long-term solution. Not much is going to change by lengthening the taper, unless you're also upping your Stelara dose or adding something at the same time.

For what it's worth, my girls both tried Sulfasalazine, both by itself and in combination with biologics. It did nothing for them whatsoever. However, they do both have pretty severe arthritis with many joints involved.

For them, MTX worked much better.

Good luck!!!


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## my little penguin

^^^yeah that
Our rheumo wouldn’t even try sulfanazine said it was too weak not worth 
I get wanting to avoid mtx
But at this point you have tried to wean more than once 
Mtxdoesnt have to be forever 
But could help until you at least have been on Stelara longer 

They considered it a very fast wean when we dropped Ds 2 mg ever two weeks 
He has also been on pred since April but is finally off
He has started Stelara every 4 weeks though and is onn20 mg of mtx


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## newdiagnosis

Thank you all for the advice!!! Right now I have only one very mildly swollen right knee joint, and I am down to 10mg. I am thinking, do you think it is worth getting a knee injection to completely calm the inflammation. I feel like the hardest part is getting the inflammation under control. Right now it is mostly under control, except for very mild right knee "boggyness", not much swelling. Maybe it just needs a steroid shot to get it "over the hump."

From your perspective what has more side effects, sulfasalazine or MTX? I will probably try that next. I definitely want to keep the stelara, as it is so convenient and I have had no side effects.

The rheumatologist advocates for Humira, but of course there is no guarantee that it will also completely work for the knees and gut. Would you all continue Stelara and add sulfa or MTx? ....or would you all opt to switching to Humira???


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## Maya142

It depends on how many knee injections you have had and what your rheumatologist thinks. Ours will not do too many steroid injections in a year. 

For knees, we have never done more than one set of injections in a year for either of my girls. However, we have done multiple hip injections in a year (2 or at most 3). They will not do multiple injections in a big joint for many years...My daughter recently had hip surgery to prevent more injections.

Side effects with Sulfasalazine and MTX are very individual. You may have no side effects with either. You may have side effects with one and not the other. No one can really tell you - it's trial and error.

For my daughters, Sulfasalazine really did nothing. It didn't cause many side effects but it didn't work. The only side effect they had was nausea. Some people have headaches.

For MTX, they both had nausea. We switched from MTX pills to injections and that helped a lot. But some people tolerate pills better, so again, it depends on the person. They took folic acid daily. Initially they both started out with 1 mg folic acid, but to help with mouth sores/nausea, we upped it to 2 mg. That worked and they never got mouth sores again.

My younger daughter had a hard time tolerating MTX, despite trying all our rheumatologist's tricks to stay on it. It worked really well for her so we tried everything we could to keep her on it. But eventually we switched her to Arava and that has worked well for her.

My older daughter only has mild fatigue the day after the MTX injection. Sometime mild nausea. She had Zofran for nausea but never needs it. She has been on MTX for years without issues.

Have you had a knee MRI recently to see how much inflammation there is? I guess I'm wondering if there is only slight swelling and no pain, if it's active inflammation or if it's osteoarthritis. Has your rheumatologist examined your knee recently?

If it's osteoarthritis, then MTX/Sulfasalazine won't do anything. I'm just saying this my husband has both osteoarthritis and a form of inflammatory arthritis - Ankylosing Spondylitis.


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## newdiagnosis

I'm pretty sure it's not osteoarthritis. My left knee, which had inflammation for a LONG time (an actually needed a debridement) is completely quiet now. My right knee only relatively started recent new inflammation. I have NO pain. Given how long I have had knee inflammation, I am 100% confident it is not osteoarthritis. 

So you all think that it's a good idea to stay on Stelara and add on immunonodulators (SSZ or MTX) rather than switching to Humira? My IBD doc agrees with me that staying on Stelara is worthwhile, but my rheumatologist thinks otherwise. Especially since I have had not side effects with stelara and it's best not to give up on a drug since there aren't really that many drugs available and I will have this disease for the rest of my life.


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## Maya142

That does sound inflammatory...but really only an MRI/x-ray can tell you for sure. My husband has severe AS but some of his joint pain is regular osteoarthritis which is treated very differently. You can also have BOTH in the same joint. He does in his ankle. 

First the goal was to treat the inflammation and then they treated the leftover osteoarthritis with an injection to "cushion" the joint.

I'm just wondering that if the left knee is the more severe one and it has responded completely, why the right hasn't responded, if it's inflammatory.

It also might be a good idea to do an MRI to see how much inflammation there really is. If there's only a little, then maybe another steroid shot would be an option. If there is still a lot, then adding a med makes more sense. 

I know for kids with JIA who have very few joints involved, they are often just treated with joint injections and an NSAID. If that does not work, then MTX is added. For kids who just have a couple joints involved, biologics are usually used last.

Since you only have two joints involved, and one is quiet now and you have NO pain, I guess I'm wondering if you could get away with using an NSAID for a short period of time or even another steroid shot.

My daughter has severe AS but mild Crohn's, so is allowed to be on an NSAID. Generally Celebrex works well and is easiest on the gut. She cannot manage without an NSAID - it makes a BIG difference for her.

I am sure I have suggested this so forgive me if I'm bringing it up again.

The other option would of course be MTX/SSZ like we said before. I don't think they would hurt at all and I would guess they would help significantly, hopefully with minimal side effects.

Just thinking out loud here...

The one thing I would not do if it was my kid is switch to another biologic when you have responded quite well to Stelara. 

If your rheumatologist and your GI don't agree, sometimes getting a second or third opinion can help you make the decision.


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## dman2000

Right now im on 15 mg of prednisone and my knees seem to be holding steady, not much swelling at all, sometimes ive been upping it to 20 mg on the weekend for a couple days if i feel some tightness but i been pretty stable on 15. I quit taking 6mp and im about to start the humira, rheumatologist and gi doc are in agreement. Rheumatologist also gave me sulfasalazine and said i could try that too but didnt really think it would do much for me so I havent even been taking it since the prednisone seems to be keeping it in check. I will have to stay on the prednisone for a little while longer and taper down while im taking humira. As far as injections, ive had some cortisone steriod injections in the past on my knees and they didnt really do much for me, more for short term relief. And if the medication works then the injections seem pointless to me since the problem isnt injury related it is auto immune. I will keep you updated on how this humira works for me since our conditions seem similar.


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## dman2000

newdiagnosis said:


> I'm pretty sure it's not osteoarthritis. My left knee, which had inflammation for a LONG time (an actually needed a debridement) is completely quiet now. My right knee only relatively started recent new inflammation. I have NO pain. Given how long I have had knee inflammation, I am 100% confident it is not osteoarthritis.
> 
> So you all think that it's a good idea to stay on Stelara and add on immunonodulators (SSZ or MTX) rather than switching to Humira? My IBD doc agrees with me that staying on Stelara is worthwhile, but my rheumatologist thinks otherwise. Especially since I have had not side effects with stelara and it's best not to give up on a drug since there aren't really that many drugs available and I will have this disease for the rest of my life.


Your condition sounds like what i have. Mine started in one knee, MRI ruled out structural damage. I had a synovectomy in that knee and the biopsey indicated inflammatory arthritis. After that it switched into my other knee. The only pain i have is when it was swollen. Since ive been on prednisone my knee swelling has gone away. My crohns has also been symptom free. I had a cat scan on my stomach a month ago and there is zero inflammation in the intestines. So my gi doc doesnt believe this arthritis is crohns related which ive been on 6mp for a long time for. Both my docs are in agreement on the humira and stopping 6mp, which doesnt help arthritis.  Now im about to start this humira because prednisone isnt really a long term deal. What we have isnt structural (maybe yours is i dont know), it is inflammatory arthritis that is related to immune system malfunction. If we keep the immune system in check then we keep the swelling in check. If the stelara doesnt work for the arthritis then you may need to switch to somthing that works for both the crohns and the arthritis, kinda the same boat im in, and you need to let your gi doc know that. Also im not 100% sure but i believe my rheumatologist said they wouldnt use humira on top of methotrexate together it is one or the other right now. I think they only resort to that if your condition is so severe that nothing works but i dont think they like mixing medications like that because humira in itself is a powerful medication much like mtx.


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## newdiagnosis

Very interesting dman. I think your situation is EXACTLY  like mine. From what it sounds like I should have started Humira first, before starting stelara. Reason why I started Stelara is that it is more convenient and safer I think. So you think there is no point of adding Sulfasalazine or MTX to Stelara, and just switch to Humira? I am on 8mg of prednisone now, and there is very minima/slight swelling, but nothing too bad. I feel like I probably should have started Humira, but now it's hard to stop the Stelara because I think it may be working. The other thing is that since I had to take the prednisone taper a few times, I am not sure if the prednisone is just masking the symptoms and the Stelara is not actually working.


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## Maya142

> Also im not 100% sure but i believe my rheumatologist said they wouldnt use humira on top of methotrexate together it is one or the other right now. I think they only resort to that if your condition is so severe that nothing works but i dont think they like mixing medications like that because humira in itself is a powerful medication much like mtx.


This is definitely not true. Humira is OFTEN combined with MTX. Stelara can also be combined with MTX. MTX in combination with a biologic is a standard treatment - they often use it for antibodies AND for therapeutic purposes. Same with Sulfasalazine.


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## my little penguin

Second that
Rheumatologist use humira and mtx together a lot even in little kids with arthritis. 
It’s not something new 
They have been using the two together safely for years

As far as switching to humira
Stelara takes a long time to work up to six months
That’s a given 
Adding mtx only helps 

Ds just had his first Stelara shot at 4 weeks yesterday


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## newdiagnosis

Just a little update. I am down to 7mg prednisone daily. I have also started on sulfasalazine 1 week ago and slowly increasing the dose (now on 500mg daily). I had a consultation with another IBD doc, and they said that they do not recommend stopping Stelara for now. I had labwork drawn this week for stelara drug levels and waiting on results. I think with addition of sulfasalazine and optimization of stelara levels both my knee swelling and Crohn's have a good chance of being well managed. Right now I have no GI symptoms, and mild right knee swelling. Hopefully I can come off the oral prednisone soon, as I have already been on low dose prednisone for 9 months. I am accelerating my steroid taper, since I just started sulfasalazine. Any advice on the sulfasalazine dose and prednisone taper? I really want to come off the pred asap! I am also having a colonoscopy to determine whether there is any residual inflammation in about 1-2 months.


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## Maya142

What dose of Sulfasalazine are you going up to? They usually do 2000-3000 mg daily, if I remember correctly. My daughter was on 2000 mg as a 12-13 year old.

My daughters did not have side effects from Sulfasalazine, besides some nausea, which I think went away. Didn't work for them though. MTX worked much better, to be honest.

It takes a while for Sulfasalazine to kick in, so I wouldn't taper too soon or too quickly.

Good luck! Hope this works and gets rid of that stubborn knee swelling.


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## newdiagnosis

I am thinking of going up to 1000-2000mg daily. I am also taking 1mg folate concurrently. Methotrexate will probably work better, but I think sulfasalazine is a safer medication. I would rather start with sulfasalazine and see how it works.


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## Maya142

That is a pretty low dose of Sulfasalazine. I've never heard of giving only 1000 mg. Is that really what your doctor recommended? Who recommended that, the rheumatologist or the GI?

My 85 lb 12 year old was on 2000 mg. When she retried SSZ when she was older (maybe 17 or so), she was put on 3000 mg, with high dose Remicade. At that dose she had some nausea, so we backed down to 2500 mg. No side effects at 2500 mg.

My husband was recently prescribed SSZ too, and he will be starting at 500 mg and going up to 3000 mg.

I understand wanting to try the "milder" or "safer" option. But you have been doing that for months - first trying to avoid a biologic. Then choosing Stelara when anti-TNFs may have been more appropriate, given their better track record with arthritis. Then trying knee injections and Prednisone since Stelara did not work for your knees, while trying to avoid SSZ and MTX.

Clearly, you have some pretty stubborn knee inflammation which is causing swelling. It has been months and it is still not better. I would treat it aggressively and get it under control. Once it is under control and you have been stable for a while (they say usually 6 months at the very least), you can back down on medications.

Most doctors agree now that steroids, even at low doses, are the most unsafe drug. They lead to all sorts of nasty side effects - Cushing's, weight gain, glaucoma, diabetes, adrenal insufficiency, osteoporosis, infection risk. You have been on them for months.

Why not give SSZ the best chance of working so you can actually get off steroids (which are really the most unsafe of all these drugs)?

I really do understand you want to use as little medication as possible but that approach doesn't seem to be working. And you don't want to deal with additional knee damage because of long-term inflammation.

Sending hugs. I hope it works for you!!


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## Maya142

Sulfasalazine dosing:



> Ulcerative Colitis
> 
> Mild to moderate cases, adjunctive therapy in severe cases, and prolongation of remission
> 3-4 g/day PO divided TID after meals; may start 1-2 g qDay
> 
> Rheumatoid Arthritis
> Inadequate response or intolerance to salicylates or other NSAIDs
> Enteric coated: 2-3 g/day PO divided TID after meals; may start 0.5-1 g qDay
> 
> Crohn Disease (Off-label)
> 3-6 g/day PO divided TID after meals
> Administration
> 
> Take after meals
> Administer in equally divided doses


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## my little penguin

Completely agree about pred being the least safe of all the drugs 
Ds didn’t have much choice- started Stelara in August 
Was on Steriods since April
Finally weaned in December 
Just saw Endocrinology due to steriods 
His bone density is down due to steriods 
His adrenal function was tested and now needs more testing because it was so low to determine if it’s “awake enough” to handle things like illness or anesthesia.
Until the second test results are complete he will have to get “stress doses “ of steriods during any scopes due to the risks 

Weaning quickly from pred can also cause a problem 
We were told very slowl wean to try and get the adrenal gland to wake up 
He weaned at 2 my every two weeks and still had issues 

Also never went above 10 mg 

So now he has joint swelling 
An adrenal gland that is only slightly awake and bone density that needs to be increased 

While on Stelara and methotrexate 
Woth scopes on a month to check on GI tract 

“Safer” isn’t necessarily better if it increases your exposure to steriods 

Our rheumo wouldn’t bother with sulfanazine said the amount of success they had with it was really low compared to the side effects


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## dman2000

Right now im on 10 mg prednisone and about to take my 3rd humira shot. Not Sure if the humira is working yet but the dr told me to start weaning off prednisone by either 1 mg a day for a month or just going down to 5 mg right away. Hopefully humira starts working if i cut back the prednisone my knees might swell. Im going to get a second rheumatologist opinion pretty soon to see what other treatment options going forward or if the humira doesnt work i might try something else.


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## my little penguin

I would check on the pred wean dman2000
A quick wean is reducing 5 mg every 7 days 
If your on 10mg and you reduce 1 mg a day you would be reducing by 7 mg a week 
Ds needed a slower wean
So he did reduction from 10 mg 
By 2ng every 2 weeks 
Took two months to get off it though 

Humira takes 3-5 months to work


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## newdiagnosis

I agree with all your comments. I might have made a mistake by going on stelara instead of anti-TNF, which has caused me to be on prednisone for a long time. Hindsight is always 20/20, and anti-TNFs are also not guaranteed to control both knees and GI symptoms concurrently. However, I do think Stelara is safer than anti-TNF, and if I can make stelara work long term I think I chose a safer route than being on anti-TNF. Stelara is also WAY more convenient dosing schedule. I can always switch to anti-TNF in the future if Stelara proves not to work. I got my stelara drug trough level and it was 3.0, below the 4.5 that is recommended. They are trying to increase the frequency of my Stelara injections. So far I have not noticed any side effects of prednisone or Stelara. I have currently weaned down to 5mg prednisone, my doctor is likely increasing the frequency of my Stelara injections, and I am only on 1000mg of sulfasalazine (I will increase to 2000mg daily soon). I only have very minimal right knee swelling and NO gastrointestinal symptoms since starting treatment. Many people are on low doses of prednisone for years with no side effects. All the side effects you talk about are above 10mg. I have only had to go above 10mg for brief periods of time. 

In regards to scopes and long term prednisone, I have been on low dose prednisone for around 9 months. I have a scope coming up in early march. If I discontinue prednisone before then, do I have to worry about stress doses of prednisone prior to anesthesia? I expect to discontinue prednisone within the next few weeks, as I increase the dose of sulfasalazine. So far things are looking really positive. In fact, I almost forget that I have knee swelling.


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## Maya142

That is not true actually - my daughter is seeing an endocrinologist specifically because she developed Cushing's syndrome and adrenal insufficiency from long-term steroid use. She was mostly on 15 mg of Pred or under - usually under 10 mg. 

She did do some courses starting at 20-25 mg and tapered down, but MOST of the time she was on steroids, she was on less than 10 mg.

But she was on it for 6 years on and off. Probably 6 months a year on steroids. 

Eventually she developed Cushing's - the big round puffy face, the stretch marks, weight gain (30 lbs) that still has not gone away, the "buffalo hump." As you can imagine, as a young adult, she was very distressed by all this. 

We were sent to an endocrinologist who told us that rheumatologists and GIs use steroids far to liberally. And also, to an endocrinologist, low dose Pred would be between 3-5 mg.

10 mg is considered a high dose. The endo ranted for quite a while about GIs and rheumatologists who get their patients into this position from using steroids too easily.

My daughter also developed adrenal insufficiency from being on steroids. Her adrenal glands are essentially asleep. She has to be given replacement hydrocortisone and could go into adrenal crisis with any sort of stressor (a cold, anesthesia, bad diarrhea etc.).

Adrenal crisis can be fatal. Yes, fatal.

Believe me, these are not side effects you want to deal with. I am just cautioning you because like you, we were told that 10 mg is a low dose. She was on it for far too long. She has very aggressive AS, which affects her SI joints, lumbar spine, ankles, knees, hips, feet, elbows, fingers, jaw and wrists. I'm sure I have forgotten a few joints.

We were trying to prevent joint damage and perhaps the years on steroids did help prevent some. But she ended up with so many side effects - besides adrenal insufficiency and Cushing's, also low bone density. 

I hope the increased frequency of Stelara will help you. Hopefully that plus the Sulfasalazine will get your knee inflammation under control. 

In terms of stress doses of steroids, you need to see an endocrinologist who will do testing to see what your ACTH and cortisol levels are.

In terms of anti-TNFs, they are not a bad choice if you have to go there. Of course, there is guarantee, but since they have been around a lot longer, there are MANY studies confirming that they work for both Crohn's and for joint inflammation. They are approved for various types of inflammatory arthritis - Ankylosing Spondylitis/Spondyloarthritis, Psoriatic arthritis, RA. So hopefully they would work for both your issues. They do for many patients with IBD + inflammatory arthritis - they are generally the first choice.

The dosing schedule is more frequent, but it's a 10 second shot at home if you are on Humira/Cimzia or Simponi. If you're on Remicade, then yes, infusions are definitely more inconvenient.

But I hope they are able to get more frequent Stelara covered, since it is definitely helping you. Just know that you do have options that are not steroids.


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## newdiagnosis

I am currently on 5mg prednisone and doing fine. If I stop prednisone completely, do I still need to see an endocrinologist?


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## Maya142

I would check with your doctor (whichever one has been prescribing the steroids) and see what he/she thinks. 

Generally, the blood work for adrenal insufficiency is done 4-6 weeks after being OFF steroids. In that time, the adrenal glands should have kicked back in. In my daughter's case, they did not. When they tested her cortisol, it was very, very low and her ACTH was undetectable. We were sent straight to the ER so she could be given IV hydrocortisone.

Since you have been on steroids a long time, I think an endocrinologist appt. does make sense. But I am a mom and not doctor!

If you stop steroids and have any of the adrenal insufficiency syndromes, I would tell your doctor right away.



> What are the symptoms of adrenal insufficiency and adrenal crisis?
> 
> Adrenal Insufficiency
> 
> The most common symptoms of adrenal insufficiency are
> 
> chronic, or long lasting, fatigue
> muscle weakness
> loss of appetite
> weight loss
> abdominal pain
> Other symptoms of adrenal insufficiency can include
> 
> nausea
> vomiting
> diarrhea
> low blood pressure that drops further when a person stands up, causing dizziness or fainting
> irritability and depression
> craving salty foods
> hypoglycemia, or low blood sugar
> headache
> sweating





> Adrenal Crisis
> 
> Sudden, severe worsening of adrenal insufficiency symptoms is called adrenal crisis. If the person has Addison’s disease, this worsening can also be called an Addisonian crisis. In most cases, symptoms of adrenal insufficiency become serious enough that people seek medical treatment before an adrenal crisis occurs. However, sometimes symptoms appear for the first time during an adrenal crisis.
> 
> Symptoms of adrenal crisis include
> 
> sudden, severe pain in the lower back, abdomen, or legs
> severe vomiting and diarrhea
> dehydration
> low blood pressure
> loss of consciousness


Good luck!


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## my little penguin

Ds was on steriods from April till dec 
Never went above 10 mg 
Was mostly below that .
His cortisol level was at the bare minimum of the normal range 
Endo said that makes them nervous 
He will now have acth stimulation testing in a week or two 
He will have to be stress doses woth steriods for the scope since results will not be back in time 

Due to the low cortisol levels we were told steriods are not really an option anymore 
Once off of steroids- he is having increasing GI and joint symptoms.
Insurance is fighting us in Stelara every 4 weeks so he is currently at every 8 weeks 
And doing poorly.

Definitely schedule an Endo visit


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## newdiagnosis

Doesn't seem like my doc thinks that an endo visit is necessary. I am down to 2.5mg of prednisone and my knee swelling is basically gone. I am on 1500mg of sulfasalazine, and planning to go up to around 2000mg. My scope is in around 5 weeks and I am planning to stop prednisone in about 1 week. Worst case scenario I might just take a morning dose of 5mg prednisone before the scope just in case, but I expect to be off prednisone within the next week. I am finally starting to see great progress on this disease that I've been battling for the past few years.


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## my little penguin

Glad the swelling is going down 
You really can’t give yourself a “stress dose” of steriods
They calculate it based on body weight 
Somethimes it’s given before ,during and after the scope 
So again not something you can do at home .
It’s a different type of steroid not prednisone.
Second per the Endo there is really no way to know if your adrenal gland is sluggish without a blood test 
It’s not as simple as looking at the person

FWIW Ds GI or rheumo did not suggest he needed to see an Endo at all
His allergist referred Ds to Endo 
And even the Endo was surprised after Ds bloodwork came back as low as it did 
Doc called the same day with a plan


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## newdiagnosis

Right. But you also have to realize that I am not the first person in this situation. The rheumatologist and crohn's doctor deal with this situation all the time. It's not the first time someone goes in for a scope after stopping prednisone. lol. They have probably seen dozens and hundreds of patients in this situation.


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## Maya142

You do have to trust your doctors - I wouldn't "give yourself a stress dose."

But based on what we have heard from multiple endocrinologists (we have seen 4 for my daughter), GIs and rheumatologists grossly overuse steroids and taper them much too quickly.

And they are too slow to refer to endocrinology even after a patient has been on steroids for many months.

We actually only got referred because my daughter was so distressed that her steroid related side effects weren't going away (puffy face, weight gain).

She was diagnosed with Cushing's then and they told us they would monitor for adrenal insufficiency, in case her adrenal glands did not start functioning.

6 weeks later, after blood work that showed no detectable ACTH and very, very low cortisol, she was diagnosed with adrenal insufficiency. 

Most patients with adrenal insufficiency do not know they have it till they go into adrenal crisis, which is prompted by some stress on the body - like sedation.

Adrenal crisis can be fatal.

That is why my little penguin was telling you that you need to see an endocrinologist to know for sure.


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## Maya142

> Right. But you also have to realize that I am not the first person in this situation. The rheumatologist and crohn's doctor deal with this situation all the time. It's not the first time someone goes in for a scope after stopping prednisone. lol. They have probably seen dozens and hundreds of patients in this situation.


You are right - you are not the first person in this situation. And 99% of the time, it is probably fine and the person's adrenal glands have "woken up" and scopes go smoothly.

But if they have not woken up, then you could potentially get into very big trouble. That's all we are trying to say - that's what we have learned based on our kids' experiences.


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## newdiagnosis

I'll tell you one thing, it feels so good to have finally conquered the knee swelling. It was an ongoing issue for the past 4 years. For around 3 years I had unexplained knee swelling, and for the past year I have been actively treating it. Now 3 days off prednisone and only on 1500mg sulfasalazine. Will start on 2000mg of sulfasalazine tomorrow. Maybe if I started sulfasalazine earlier i would have made faster progress? ...not sure, but I think it is the combination of the intesintal/mucosal healing from stelara, the steroid taper, and the recent addition of sulfasalazine. I'm glad I didn't switch over to anti-TNF. I was soo close to stopping stelara and starting anti-TNF.


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## newdiagnosis

Hey All. Just a little update. My knee swelling has resolved and my knees have been doing well. for a while. However, over the last week, I developed some intermittent pain in my left knee which is sharp and only happens while bending the knee in certain positions. You think this can be a sign of osteoarthritis? This all began sorta acutely after I felt a sharp pain while bending the knee. The knee does not hurt while walking, only while flexing the knee.


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## Maya142

It could be osteoarthritis or inflammatory arthritis - it is hard to tell without imaging. It could also be mechanical damage from being inflamed for so long. 
I would contact your rheumatologist and go from there.


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## newdiagnosis

I saw my rheumatologist today. She doesn't think it is anything to worry about, although she said I could get an MRI if I really want to. I think it was just the scar tissue breaking up, because the knee is feeling better and not much pain. There is some crepitus though, so I may have very early osteoarthritis. Interestingly, she told me that I should try taking Cosamine ASU to help rebuild any damaged cartilage.  What do you all think?


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## newdiagnosis

I am seeing an orthopedic surgeon tomorrow. I am afraid that there might be some damage to the cartilage from being inflamed so long  interestingly is that there is no swelling.


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## Maya142

I  would definitely have an MRI done - that will tell you if there is cartilage wear etc.


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## newdiagnosis

I had an MRI done. Basically shows a patellar bone bruise and some fissuring of the cartilage underneath the patella. There is also a focal cartilage defect and some debris.


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## Maya142

So no inflammation - synovitis, bone marrow edema, an effusion?

That doesn't sound too bad...a bone bruise can heal. Let us know what the orthopedist says.


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## newdiagnosis

The orthopedist said that the only thing he sees is the bone bruise. On the MRI they noted some cartilage fissuring adjacent to the bone bruise and a focal full thickness defect of cartilage on the tibial plateau. There is very minimal fluid on MRI, no effusion apparent on exam.


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## Maya142

And has your rheumatologist weighed in? None of that sounds too bad, which is good news!

My daughter had a bone bruise from soccer and it took PT and a while to heal, but it did heal. We used a lot of heat and Voltaren gel, as well as a knee brace when she had to do a lot of walking/running.

It sounds like all the inflammation is gone, which means Stelara and Sulfasalazine are working for you!


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## newdiagnosis

Thank you so much for your advice. One thing that I am worried about is the fissuring of the articular cartilage underneath the patella and that there is a focal defect of cartilage loss on the tibia. I just hope that doesn't progress. And yes the Stelara and Sulfasalazine are working very well.  I have also been doing knee extensions to build muscle and today I found out that is very bad for your knee. I wish I had known.


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## newdiagnosis

So my knee swelling was gone for like 9 months. And now after tapering off sulfasalzine my swelling has returned. Really hope that the swelling goes away after starting restarting sulfasalazine.


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## Maya142

That is common, unfortunately - the disease and inflammation come right back after the med is stopped. Some flare months after tapering off, and others flare immediately. Some very lucky patients do not flare at all and stay in non-medicated remission.

For kids with JIA, new research suggested that tapering of meds should only be started after a kiddo is in medicated remission for *two years.* Not just for months, two whole years.

Anyway, I hope Sulfasalazine works for you. We have had pretty good results with restarting immunomodulators - they work just as well the second or third time. Restarting biologics is trickier, but of course, it can be done.


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## newdiagnosis

Thank you Maya for reassurance. I really do hope the sulfasalazine works well second time around. I honestly just thought the stelara was taking care of the joints, since I was only on 500mg to 1000mg daily of sulfasalazine. Now the joint swelling is in full force, so going back on a prednisone taper starting at 30mg. I was in joint remission for close to 8 months. 

At least now I know that the Stelara isn't doing much for the joints.


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## my little penguin

newdiagnosis it may be the combo is needed for the arthritis 
For ds he needs Stelara (high-frequency), Celebrex AND mtx 
Any one drug by itself is not enough 
And definitely not enough woth just Celebrex and mtx 

Or even normal frequency of Stelara woth the other two 

We have watched what happens to Ds joints over the past year on Stelara 
After the increase in frequency we have seen an improvement 
 But also realize when Ds has forgotten a dose of even Celebrex 
He can feel /see the difference in his joints

Really hope the sulfanizine helps quickly for your knees 

FWIW humira by itself wasn’t enough for his joints either 
Needed mtx to be added 

Good luck


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## Maya142

Well, if Sulfasalazine is working, then that's great! It's a pretty mild drug - I am surprised it's working and not the Stelara. But everyone is different. Even in my own family, my husband and both daughters have AS. Each responds differently to medication and the severity of the disease varies. They all have pretty severe disease but the amount of swelling they see and pain they are in varies greatly. Additionally, the number of joints they have that are affected varies a lot - my younger daughter has almost every joint involved while my husband's main issues are his hips and spine and one ankle.

The good news is that peripheral arthritis (like of the knee) does respond to meds like SSZ and MTX. So if Sulfasalazine does not work, you have another option.

I would REALLY be wary with the Prednisone. Doing a joint injection is much safer than being on 30 mg and doing a long taper. Two years ago, I would have agreed that Pred was the right thing to do but after watching my daughter struggle with adrenal insufficiency and Cushing's, I would be VERY wary around steroids. According to our endocrinologist, rheumatologists and GIs prescribe them far too easily.

What is the reason you are on Pred? Do you have other joints involved besides your knees? If it's only two joints, injecting a steroid into the joints is really the better option. They can also drain the fluid from your knees to make you more comfortable (aspirate) - that will get rid of the swelling.

I would only go to oral steroids if you are in severe pain or have severely limited mobility. They should really be used as a last resort.

Sulfasalazine should work in 8 weeks or so - hopefully you will see improvement sooner though.

Also, I would do a proper therapeutic dose of SSZ - for an adult, that should be between 2000 and 3000 mg.


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