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rowdyirish1

rowdyirish1

Joined
Aug 28, 2015
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Three years ago I was diagnosed with Crohn's in the terminal ileum. Within a year and a half I was experiencing very painful heals and extreme stiffness in the lower back upon waking. The heals hurt all day every day and I couldn't get enough gel insoles in my work boots. By the end of year 2 I was experiencing excruciation pain in my sternum, collar bones, back (Sac, lumbar and between shoulder blades), rib cage in random alternating locations and shoulder tips. I was immediately put on high doses of hydrocodone graduating to Roxicodone which almost completely took care of the diarrhea. I was then told that I had Crohn's related arthritis or possibly Ankylosing Spondilitis and was prescribed Humira (which I refused to take). Even with the Oxy on board the pain was unbelievable and almost pushed me over the edge. My local physician put me on 80 MG of Prednisone for three days and began tapering to 20 MG. Within the first two days I was completely pain free and had a ton of energy which enabled me to tackle two years worth of honey do's. Now 20 MG just doesn't cut it for me and the pain comes back in full force if I even think about dropping any lower.
So..... With that said, my question (finally) is how many of you suffer from a form of RA or AS due to your Crohn's? What are you taking for each? Have you found relief from one and not the other with your current treatment?
 
My daughter has both Crohn's and Ankylosing Spondylitis. She has been on Humira, Remicade and is now on Simponi (with various combinations of immunomodulators -- either Methotrexate, Imuran or Arava).

For her we have realized that she needs an an Anti-TNF and an immunomodulator to keep the diseases under control. Steroids also help her a lot but of course she can't be on them forever. She is allowed (by her GI) to be on an NSAID since her AS is so much worse than her Crohn's but most people with Crohn's are unable to take NSAIDs.

Are you seeing a rheumatologist? Also, Spondylitis.org has a lot of good information about various treatment options.
Good luck!
 
I have arthritis as well, it's very common for people with Crohn's or ulcerative colitis, I heard numbers of up to 30 % of those who have Crohn's that have some kind of arthritis.
I haven't been able to continue on my normal life without immune suppressants and cortisone would not be an option to me long term.
 
Maya142 said:
My daughter has both Crohn's and Ankylosing Spondylitis. She has been on Humira, Remicade and is now on Simponi (with various combinations of immunomodulators -- either Methotrexate, Imuran or Arava).

For her we have realized that she needs an an Anti-TNF and an immunomodulator to keep the diseases under control. Steroids also help her a lot but of course she can't be on them forever. She is allowed (by her GI) to be on an NSAID since her AS is so much worse than her Crohn's but most people with Crohn's are unable to take NSAIDs.

Are you seeing a rheumatologist? Also, Spondylitis.org has a lot of good information about various treatment options.
Good luck!
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Yes I have both a GI doctor and a Rhuematologist. Unfortunately, neither of them are happy with my primary physician for keeping me on prednisone. They are convinced that Humira is the only treatment option for me regardless of how I feel about taking it! I see so many people on this forum that aren't taking a biologic and wonder why! If Humira is supposedly the end all beat all then why isn't everyone taking it? This according to them is my only treatment option.... I have had two cancers already and it is common on both sides of my family so I'm very leary of taking anything that increases the odds!
 
Charlotte. said:
I have arthritis as well, it's very common for people with Crohn's or ulcerative colitis, I heard numbers of up to 30 % of those who have Crohn's that have some kind of arthritis.
I haven't been able to continue on my normal life without immune suppressants and cortisone would not be an option to me long term.
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As I explained to maya142 I refuse to take Humira and don't understand why if this medicine is so great why isn't everyone on it? What are your pain levels like? Do they seem to migrate around your body like mine? I can't take NSAIDs like everyone else and the pain pills only work with the prednisone and visa versa! I know that prednisone can be dangerous as well but I'm not really experiencing a lot of side effects so it's hard for me to just give it up for something that may not work or stimulate my cancerous genes!
 
For us, Anti-TNFs have been an absolute miracle. My older daughter went from being in a wheelchair to being an active college student who plays soccer! She still has pain but it's very mild and she certainly isn't on steroids or pain meds. My younger one is still a work in progress, but without an anti-TNF, she's in so much pain that she can't walk, sit or sleep.

For AS your treatment options are kind of limited.Most rheumatologists would start with NSAIDs, but those are out for you. Beyond that, most would go straight to anti-TNFs -- Remicade, Humira, Cimzia, Simponi or Enbrel. Remicade and Humira have been used longest in both Crohn's and AS, and that's probably why your doctors are recommending Humira.

The cancer risk is actually very small. CCFA has a good presentation that explains the risks and benefits of IBD treatments: http://www.ccfa.org/resources/balancing-the-risks-webcast-9-09.html

For us, it was very clear that the disease was more dangerous and scarier than the treatments and we didn't want our daughters to end up with a lot of damage to their joints.

My husband also has AS and was treated only with NSAIDs (biologics were not available then). He is in remission now, but for many years was in a lot of pain. He has had five hip replacements and his spine is partially fused and SI joints are completely fused.
 
For me, it is quite similar to Maya142. The disease is more dangerous than the treatment.
I had to stop doing sports (too much pain), I could not attend university for the past 5 months, I could not sleep, I kept on working even though I felt very, very miserable, I could not laugh for days (which is very uncommon for me), I could not recognise myself any more.
My pain is not really migrating, nearly every joint is inflamed (apart from the middle of my back) and hips and knees are inflamed the most, as well as fingers and ileosacral joints. Does not only sound bad, feels awful. I don't have any pain medication, I take cool packs to be able to sleep for the joint pain.
The terminal ileum pain comes on top of that.
I don't think the anti-TNFs are the ultimate solution, it's just another option for immune suppressants. For some people azathioprine works fine, others do well on methotrexate, 6mp etc.
For my bones the immune suppressants are much better than long term steroids because they weaken my bones even more.
 
Same here as Maya142
My kiddo has juvenile spondyloarthritis.
He also takes humira plus mtx.
I think you looking for a mild one size fits all miracle drug.
Pred has horrid known side effects
Ds had to start Pred in April due to a flare induced from holding humira ( ear infection).
Once we held humira his symptons and joint inflammation went through the roof
Once back on humira that all went away
Not sure why everyone else you see on here has to be on a med for you to follow your docs recommendations
Docs recommend what they feel is best for the individual patient based on their history
Not the same for everyone.

Joint damage is not something to wait to get worse
 
The heals hurt all day every day and I couldn't get enough gel insoles in my work boots. By the end of year 2 I was experiencing excruciation pain in my sternum, collar bones, back (Sac, lumbar and between shoulder blades), rib cage in random alternating locations and shoulder tips
Click to expand...

Some studies show that drugs like Methotrexate do not work well for spinal pain. They work well for peripheral joints (for example hands, elbows, knees etc.) but not for when the spine is involved (axial joints). I would guess that is why your rheumatologist recommended Humira over something like MTX.

Some people do have a lot of success with MTX, including my girls, so you could definitely try it. It does come with side effects but so does any and every drug and for most people, the side effects are relatively mild.

I will say that my girls have had a hard time with drugs like MTX in terms of side effects but have had literally NO side effects from Remicade/Humira/Simponi. NO increase in infections or anything like that.
 
Thank you for this thread. I'm scheduled to see a Rheumatologist on Saturday. In reading about various conditions, I'm wondering if I have ankolising spondylitis as well. I have severe rlq pain. My cs was clear. My CT showed sacroilitis. My GI referred me to Rhematologist as a result.
 
I'm so sorry for all the pain you are in. It's awful and I wouldn't wish it on my worst enemy. I'm in your same boat. I have several autoimmune diseases and to top it off, I recently tested positive again for RA/Lupus. When I was 21 I got shingles. I was the youngest case that hospital had ever seen. From there they diagnose fibromyalgia. I take Cymbalta and it is amazing. I am in no way pain free but if I ever don't take it I am immediately reminded of what a big role it plays in alleviating some of the nerve and muscle pain.

It has very few side effect. It was actually made as an antidepresent but in larger quantities it is amazing for pain related to RA etc.

I have started physical therapy as well as talking with an endocrinologist to determine what else is going on.

Don't be afraid to doctor shop. You can even try a naturopath. Also, look into MTHFR...it is apparently a big thing. My sister has it and wasn't able to provide nutrients for her newborn that was even born with failure to thrive. After my sister got on these ape I am vitamins she did great and had another child. Some dr's are skeptic but aren't they always when something new comes out lol

Best wishes hun.
 
And of course the Rheumotologist sends me back to the GI with a "nothing to see here". She feels it's GI because of the location of the pain. In spite of the negative Colonoscopy, she feels there is clearly an inflammatory process.

GI mentioned referring me to Dr. Kornbluth at Mt. Sinai. Anyone have any experience with this GI?
 
My Crohn's family member was also diagnosed with ankylosing spondylitis. From the recent literature, it appears that there may be both genetic and infectious reasons for the presence, and co-occurrence of these diseases.

A paper by Jostens and about 100 co-authors (2012, link) reports a total of 163 genetic loci associated with IBD's. 110 of these were common to both Crohn's and ulcerative colitis; 30 were Crohn's specific; and 23 were UC-specific. And a direct quote: "Many IBD loci are also implicated in other immune-mediated disorders, most notably with ankylosing spondylitis and psoriasis. We also observe considerable overlap between susceptibility loci for IBD and mycobacterial infection." (boldface added for emphasis)

This paper bolsters the argument that mycobacterial infection is a potential cause of Crohn's (and other diseases), as leading Crohn's - MAP researchers have contended for years. (MAP = Mycobacterium avium paratuberculosis). If this topic is totally new to you, a great starting point is a youtube video Crohn's Controversy: Cause, Vaccine and Anti-MAP Therapy. Also, I've posted some links over at http://www.crohnsforum.com/showthread.php?t=73790.

Edit: Added the following
I attended the Crohn's infection symposium last month in Deerfield, IL. I think the leading docs in the field no longer consider Crohn's an autoimmune disease--an autoimmune disease is when one's own immune system attacks its host (you). Rather, MAP infection takes hold in immuno-compromised individuals. That (in my words) is the view Dr. William Chamberlin and others at the symposium were espousing.

Good luck to you & your health.
 
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Primary sclerosing cholangitis, on top of Crohn's for this old bear. Much pain when joints et al do their arthritic impersonations from the Crohn's.

Keep persevering everyone!:ghug:
 
GABoy said:
And of course the Rheumotologist sends me back to the GI with a "nothing to see here". She feels it's GI because of the location of the pain. In spite of the negative Colonoscopy, she feels there is clearly an inflammatory process.

GI mentioned referring me to Dr. Kornbluth at Mt. Sinai. Anyone have any experience with this GI?
Click to expand...

Hi GABoy,
Dr. Kornbluth is my doctor, I have been extremely happy with him. He is well-known within the Crohn's medical "community" in NYC as an expert in the field and has a wealth of knowledge. I have been very pleased with his bedside manner and find him to be warm and caring. Only major downsides is that he does not accept insurance and his appointments run very late--so I typically am seen at least an hour after the scheduled time. That being said, he also spends a lot of time with me during the appointment and I never feel like he is rushing. If you want more info, feel free to PM me (if thats possible, I'm new to the forum and to the diagnosis!).
I hope you feel good soon!
 
Hi everyone,

I went to pain management. He has determined that my RLQ pain is related to muscle guarding from my last flare. He sent me for pt and rx of Bachlafan (muscle relaxer). The good news: my RLQ pain is much better. The bad news: any type of stretch causes pain in my hips and I'm having left sided mid-back pain. AND I believe my PA Crohn's symptoms are flaring again... Rectal pain and bleeding.

As the Rheumotologist simply ignored me and said everything is Gastrointestinal, is it worth going to see and Ortho for my hips and back? I have a close friend who is an Ortho and would at least send me for MRI. Thoughts?
 
GAboy, I would push with the rheumatologist since it is common for those with IBD to have extra intestinal manifestations that include joint pain.

My son has CD his joint pain when his CD flares is in his knees and ankles but he also has spondyloarthropathy which can be common with a CD dx. It runs independent of active CD flares and the pain is in his hips and lower back.

So he is on Humira and methotrexate since they are both effective meds for both conditions, not all CD meds are.

If the rheumatologist you saw isn't familiar with the EIMs that occur with CD then I would see out one who is.

I hope things improve soon for you.
 
I was able to see both my Rhuematologist as well as my Gastro within hours of each other. My Gastro specializes in Crohn's and her door is literally 10 feet away and you would think that they would communicate with each other in a situation like mine. Rhuematology says they believe that the two (Crohn's & AS) are related but don't believe the flares follow each other. She prescribed an NSAID and MTX for the intense pain from the belt line up to the base of my head. Then I see the Gastro and she says absolutely NO NSAID's... That the inflammation in the sternum and spine most definitely follow the Crohn's flares. She also says that MTX will prevent antibodies to Humira it does nothing to help large joint inflammation like mine. So...She does an emergency colonoscopy and says I've run out of time and have to start MTX & Humira or plan on surgery in 3 to 6 months. So basically the Gastro contradicted everything the Rhuematologist said and could have saved me an office visit. I agree that these diseases are a mystery for the most part and connected in so many ways but I don't understand why they can't agree on cause and effect. If Crohn's is truly an autoimmune disease then why is the Rhuematologist so far off base?
 
I'm going to tag Maya142 as both her daughters have AS and one also has CD.

My son's JSpA(juvenile spondyloarthropathy) has the same result as AS. JSPA and AS have flares that run independent of active CD flares. Meaning your CD can be in remission and your AS can still be flaring.

My son's GI had him on first remicade and when that failed Humira. Both were taken with mtx. The rheumatologist upped the mtx and wanted us to shorten the humira schedule. We will probably being doing that after next colonoscopy.

Maya142 can give you some great info about the AS and meds.

Our rheumatologist wanted an NSAID as well but wanted to clear it with the GI. The GI didn't want an NSAID added so no NSAID yet. GI said in deep stable remission of CD he wouldn't disallow but since C hadn't reached deeper stable remission he didn't want to rock the boat.
 
Like Clash said, arthritis can flare independently of Crohn's and vice-versa.

MTX is definitely still used for peripheral joints (joints other than the spine -- knees, heels, elbows, hips, shoulders etc.) and does help a lot with them, for a lot of people. Both my daughters have been on MTX (both have AS) and the older one is still on it.

However, most rheumatologists will agree, that for most people MTX does not help axial (spinal) pain. So they use either NSAIDs for that or biologics.

My younger daughter had IBD and AS, but since her IBD is relatively mild, and her AS is severe, she is allowed to use NSAIDs. She is also on a biologic.

If GI won't let you use NSAIDs, your only option left really is biologics - Remicade and Humira tend to be used first.

As for flaring at different times - most of the time, when the spine is involved, AS seems to flare independently of CD. So you could treat the CD, and the AS wouldn't necessarily become better. That said, if you're treating the Crohn's with something like Humira, which is used for both AS and Crohn's, then (hopefully) both diseases will respond to it.

Inflammation and pain in the spine and sternum is VERY common in AS. I would try Humira before having surgery, because it could address BOTH problems.

CCFA has a good explanation about the various kinds of arthritis with IBD:http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf
 
Thanks Maya! I should've made it clear the rheumatologist upped my son's mtx due to joint pain in the smaller joints and not his hip/back pain associated with JSpA.

C's smaller joints tend to flare only with active CD the hip/back are independent of his CD flares.
 
Some rheumatologist do still use MTX for axial (spinal) arthritis, even though there have been studies that show it doesn't really work.

In my daughter's case, all her joints seem to flare independently of the CD.

Good luck!
 
Yeah, C swears his hip pain backed off when he upped the mtx. I'm not sure it isn't coincidence. He's still fairly stiff in the mornings and really needs to start exercises, recreational activities, yoga something to keep those joints moving!
 
Clash - my girls swear MTX works for their hip and back pain, even though it isn't supposed to! They have argued with many rheumatologists about this ;). Who knows, I'll take whatever works!
 
Right now I'm injecting 1ml (25mg) of MTX once a week while waiting for my insurance to approve Humira. I'm not getting any relief whatsoever but I'm only on my third dose. I think the GI was hoping the MTX would slow down the Crohn's until we can get the biologic on board. I'm certain she plans on lowering the MTX dose to a maintenance level whatever that may be. I understand the need to keep the body from building antibodies but if MTX isn't helping with anything else isn't there something safer to prevent antibodies. I have to admit that I was hoping to get some relief from the MTX but now I'm looking forward to starting the Humira. For those of you already on Humira, how long before you started to notice a change in fatigue, back/sternum pain and finally bowel pain respectively? What is your current MTX dose with Humira?
 
My son's dose is also 1ml. Mtx is a med that is used as monotherapy for CD but can take 6-8 weeks to reach therapeutic levels. It also does help to prevent antibodies to humira. The other meds that do this 6mp and imuran have shown greater risks especially for young adult males. Besides immunosuppressive meds I don't think there are others that help with antibody prevention. Sorry.

For some humira works quickly for others it takes longer.

My little penguin has a paper on how long it should take humira to reach therapeutic levels. Tagging her should Brian her by but I want to say 12 weeks.
 
I wanted to add that the blood work I had done recently showed that I was/am anemic. GI doc never really said why and didn't address any treatment. Have any of you had to deal with anemia in addition to the Crohn's? If so, what treatment if any was offered? Did the doctor offer an explanation?
 
It took 3 months for Humira to work for my older daughter and 5-6 months for my younger daughter. They both needed MTX with the Humira + weekly shots before they started to get better. Some people get better immediately, for others, it takes a while. MTX generally takes 6 weeks or so (at least) to work.

Other than MTX, you could use something like Imuran/6MP to prevent antibodies. However, it isn't any safer - in fact, I think MTX has a better safety record. I wouldn't give up on MTX yet, because you've only just started it.

My younger daughter has been on a number of doses of MTX with Remicade/Humira - anywhere from 7.5 to 25mg (by injection). It depends on your doctor and how much you need. Through trial and error, we figured out that doses under 15mg did not work for her.

My older daughter is on 15mg of MTX. She has also been on up to 25mg with Humira, but has been able to reduce her dose over time.
 
My daughter has had iron deficiency anemia with her Crohn's. It was prior to being diagnosed with Crohn's, so we couldn't figure out why her iron was so low at the time and blamed the AS (AS can also cause anemia). She tried iron tablets for a few weeks, and they really bothered her stomach. Her Ferritin was very low and wasn't increasing with the tablets, so then she had iron infusions. Those helped a lot.

Generally most doctors will start with oral iron supplements and then if those don't work, they'll go to infusions.
 
3-4 months is typical for humira to reach therapeutic levels
DS took 4-5 months but we changed his dose from 20 mg to 40 mg after 3 months .

He only takes 12.5 mg of oral mtx with his humira
 
My son has had anemia and he has taken iron pills and had iron I fusion when low. But once the flare is stopped and healing the anemia has resolved itself at other times
 
I've also been iron anaemic before I was diagnosed and my GP never wanted to find the reason because he thought there is none. My Gastroenterologist was upset that my GP did not even try to find a reason.
 
Maya142 said:
My daughter has had iron deficiency anemia with her Crohn's. It was prior to being diagnosed with Crohn's, so we couldn't figure out why her iron was so low at the time and blamed the AS (AS can also cause anemia). She tried iron tablets for a few weeks, and they really bothered her stomach. Her Ferritin was very low and wasn't increasing with the tablets, so then she had iron infusions. Those helped a lot.

Generally most doctors will start with oral iron supplements and then if those don't work, they'll go to infusions.
Click to expand...

My GP gave me a script for infusions up to 3X a week if needed. I just haven't felt like leaving the house lately. But... If the Iron infusions really do work it might be worth sitting at the hospital for a couple of hours. I would do anything to feel even halfway normal right now....
 
My son had one last month. I think he was only there an hour so it wasn't bad. The staff mentioned another type that was even quicker.
 
Yes, same with my daughter -- took about an hour, and she had one every week for four weeks or so. Very easy and my daughter felt better immediately.
 
I had infusions as well and for me it took a few days until I felt better then. The first thing I noticed was that I felt calmer and could sleep better the night after the infusion and since then.
 
I have all the issues you have mentioned. I am currently on Humira, Methotrexate, Sulfazaladine. Since going on the Methotrexate I have had a decrease in pain. I know what you mean about pain that can drive you over the edge. I have had this kind of pain for about 13 years now. Only since this past summer have I had some relief and my pain was cut in half.

I wish you the best of luck and hope you can get some relief soon. :thumright:
 
Ya, I'm thinking I will head to the clinic tomorrow for an iron transfusion. Winter is coming and I've got a stack of projects that need to be finished before snow flies. Meaning I can't afford to wait and hope that the anemia corrects itself once the flare starts to diminish. I know there are no guarantees with ANY treatment associated with Crohn's and AS but I'm learning that sitting on the couch feeling sorry for myself is definitely not conducive to healing for feeling well. Thanks to everyone that commented in this thread, you have all given me a little more hope.
 
Anemia is very common with Crohn's, even if you aren't bleeding anywhere. Crohn's causes absorption problems which leads to deficiencies.
I am glad you decided to start Humira. I think it will really help you. I took Humira in 2009, I had a unusually fast response to it and went into remission with in that month. I had to stop taking it though because I started getting welts on my legs from it and my rheumy thought I might be developing an allergic reaction to it. So I am on Remicade now and my AS has gotten SO much better. I haven't worked in 3.5 years because of all of my health problems, the biggest one being AS. I had trouble breathing, I had a hard time sleeping, standing too long hurt, sitting too long hurt. I started Remicade last October, decided by April that I could handle going back to work and I start my new job tomorrow. I know biologics are scary, but untreated disease is more likely to cause cancer than biologics are, ad at least with biologics you can have your life back.
 
On humira and just started azathiropine. Crohns and crohns related arthritis. My stomach issues are being manage good enougj but no remission yet. Joint pain is inreal somedays. Dr. Said i should notice relief in 2 or 3 months.
 
I had my first Iron infusion on Tuesday and am scheduled for two more shots, four days apart. No real difference yet but it's still early. Tapering off the prednisone and starting Methotrexate are probably both contributing to the fatigue! I just wish I could turn the clock ahead a couple of months and see how this movie ends!
 
Yes, I have 4 autoimmune diseases, including spondyloarthropathy (crohns related arthritis) It comes and goes just like the gut issues do and not always at the same time. I have tried 2 medications but reacted badly to them both. (That's just me, my body does that a lot) Specialists are colluding now to try and sort it all out with one drug. We will see. All the best - you would know by now you are not alone, loads of us have the same probs amd we all feel for you - all the best for wellness in the future! :hug:
 

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