I went through a few Rheumotologists and medications before finally one of them (or was it my GI) said I have IBD arthritis.  The typical arthritis medications do not help.  So what do I do?

As I am one of the fortunate "now you have Crohns" j-pouchers, I take medication for Crohns (Azothiaprine), a probiotic (Culturelle), and have a prescription from a pain management specialist for small doses of Hydrocodone to ease the aches, etc.

I went for a few years without the Hydros and ended up taking wayyyy too many Tylenol to each the aches before going back to the pain doctor.  

What does the doctor mean by "normal" arthritis? There is no such thing. Does she mean osteoarthritis, which is the common degenerative type?

Rheumatoid arthritis has nothing to do with IBD. However, there is inflammatory arthritis associated with IBD. There are two types. There is the peripheral arthritis that tends to wax and wane, following the intestinal disease course. Then there is the axial (spinal) arthritis that has an independent course from IBD. One hallmark symptom is sacroiliitis for more than 3 months. This is ankylosing spondylitis and does not have RA factor positive tests, but there may be a positive antibody HLA-B27. Still, about 30% or more with IBD are not positive for this antibody. Treatment is similar to rheumatoid arthritis.

For me, when Humira lost its effectiveness, I moved on to Simponi, then to Cimzia. Now I'm on Remicade along with Imuran. Sure, stretching, and exercise do much to relieve pain and maintain flexibility, but there is more to do.

Jan

Thank you no Colon.

Thank you Jan for all the informative arthritis info. Do you have an opinion about how high inflammation markers can be without causing long term damage? I know the arthritic component of IBD does not cause long term joint damage and from my son's scopes he is not having damage in his digestive system - yet is there cause for concern somewhere else with the slightly elevated CRP and ESR?

Thanks all.

"arthritic component of IBD does not cause long term joint damage"

Actually, this is not true. If he has spondylitis, there can definitely be joint damage. Sure, it is less of an issue for IBD related spondylitis, than with ankylosing spondylitis, but definitely an issue. Part of the concept of biologics for spondylitis is to prevent or slow the damage. I definitely have damage.

It is the arthritis that follows the IBD disease course that tends not to cause permanent damage. Spondylitis is independent of the IBD disease and can occur long before you have IBD symptoms, or long after colectomy.

In regard to the CRP and ESR levels and long term damage, I cannot really answer that. All I can tell you is that there is a poor correllation between those levels and specific disease states. Those lab values are mostly for monitoring treatment, so the actual number does not really tell much.

For more info about spondylitis you can read here:

http://www.spondylitis.org/Lea...Spondylitis/Overview

Jan

@Jan Dollar posted:

What does the doctor mean by "normal" arthritis? There is no such thing. Does she mean osteoarthritis, which is the common degenerative type?

Rheumatoid arthritis has nothing to do with IBD. However, there is inflammatory arthritis associated with IBD. There are two types. There is the peripheral arthritis that tends to wax and wane, following the intestinal disease course. Then there is the axial (spinal) arthritis that has an independent course from IBD. One hallmark symptom is sacroiliitis for more than 3 months. This is ankylosing spondylitis and does not have RA factor positive tests, but there may be a positive antibody HLA-B27. Still, about 30% or more with IBD are not positive for this antibody. Treatment is similar to rheumatoid arthritis.

For me, when Humira lost its effectiveness, I moved on to Simponi, then to Cimzia. Now I'm on Remicade along with Imuran. Sure, stretching, and exercise do much to relieve pain and maintain flexibility, but there is more to do.

Jan

hey Jan, maybe you can try to help. So in the past i have had some joint pain in a few of my fingers and saw my ortho doc who is a hand specialist and he did injections that helped. I had Covid end of May and then i had my firsy shingles vaccine about 6 weeks ago. A few weeks after that shingles vaccine i started getting very sore in my finger joints, wrists, and sometimes in my ankles. I am scheduled to see a rheumatologist in about a month. I am already assuming it to be Rheumatoid arthritis. But I saw your comment on there being inflammatory arthritis associated with IBD. Does this type show up as positive with all the labs I am sure they will run for RA. ? its very mild and I have read about all the many RA drugs and biologics and the side effects dont seem fun. But if IBD related inflammatory arthritis and not RA , can it still cause deformaties? It sucks we cant take NSAIDS for this but right now i just do cannabis.

It is unclear to me why you would assume it is RA. Your primary doc could easily order blood tests for RA to confirm or rule it out. But, it could be a myriad of different types of inflammatory arthritis, or just plain old osteoarthritis. You probably had steroid injections, which would work for any of those.

IBD related arthritis and spondylitis are diagnosed by ruling out RA and other serology positive types, like lupus. Since you do not mention axial arthritis (spinal), it is not likely a form of spondylitis. This is where the careful history taking is important. I have both enteropathic arthritis and osteoarthritis.

Jan

@Pouchomarx posted:

hey Jan, maybe you can try to help. So in the past i have had some joint pain in a few of my fingers and saw my ortho doc who is a hand specialist and he did injections that helped. I had Covid end of May and then i had my firsy shingles vaccine about 6 weeks ago. A few weeks after that shingles vaccine i started getting very sore in my finger joints, wrists, and sometimes in my ankles. I am scheduled to see a rheumatologist in about a month. I am already assuming it to be Rheumatoid arthritis. But I saw your comment on there being inflammatory arthritis associated with IBD. Does this type show up as positive with all the labs I am sure they will run for RA. ? its very mild and I have read about all the many RA drugs and biologics and the side effects dont seem fun. But if IBD related inflammatory arthritis and not RA , can it still cause deformaties? It sucks we cant take NSAIDS for this but right now i just do cannabis.

Agree with Jan. Would not assume you have RA particularly given the chronicity you’re describing (history of injections in the past). OA is by far the most common type of chronic joint pain. If inflammatory (not OA), there are many types of immune mediated arthritis, including those that don’t fit neatly into any classification schema. Also you can have seronegative RA, meaning negative RF and CCP, so there won’t be any one specific lab to diagnose or rule out disease. All of the inflammatory arthropathies are clinical diagnoses based on a combination of history, exam findings, labs and imaging. The worsening joint pain maybe be a post-viral/vaccination inflammatory syndrome (that is, if you have joint inflammation) which is typically self limited. Shingrix is very immunogenic and can cause all sorts of symptoms. Good luck at the rheumatologist.

@Jan Dollar posted:

It is unclear to me why you would assume it is RA. Your primary doc could easily order blood tests for RA to confirm or rule it out. But, it could be a myriad of different types of inflammatory arthritis, or just plain old osteoarthritis. You probably had steroid injections, which would work for any of those.

IBD related arthritis and spondylitis are diagnosed by ruling out RA and other serology positive types, like lupus. Since you do not mention axial arthritis (spinal), it is not likely a form of spondylitis. This is where the careful history taking is important. I have both enteropathic arthritis and osteoarthritis.

Jan

I have had lower back pain on and off for a few years. I went to pain mgmt 2 years ago and they ended up doing MRI. showed I had disc degeneration of L4 and L5. Stated it did not show AS, but spondylosis. And some minor arthritis in neck. Did PT for a few months and I see chiropractor 2 times a month and my back has been good. Knock on wood. Worst part is my fingers. Middle joint on middle finger was really sore and doc injected it but X-ray showed inflammation. It felt good for a few. Weeks but yesterday I was doing yardwork and that joint now hurts worse than before the injection now.  I’m just scared , don’t want to go on any nasty meds

Osteoarthritis generally affects the middle and distal joints in the fingers. If your knuckle joints are affected, it points to inflammatory arthritis, like RA or spondylitis. Spondylosis is not related to spondylitis.

But, regardless, your rheumy will sort it out. Good luck.

Jan