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.
Knee Swelling
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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
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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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.
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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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.
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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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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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.
Good luck!
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.
Good luck!
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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
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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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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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
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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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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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.
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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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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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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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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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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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.
interestingly is that there is no swelling.
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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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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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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!
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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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.
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.- Joined
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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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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.
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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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.
At least now I know that the Stelara isn't doing much for the joints.
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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
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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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.
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.
