TTMA RA

[wowhead]

I’m already planning to see my PCP to discuss this next week but I’d like to hear your experiences. 

I have worsening arthritis happening in multiple joints and it’s always on both sides of my body at the same time. Both of my thumbs have hurt like hell for over a year now. I saw an ortho and X-rays didn’t show any damage to those joints. I got cortisone shots in both hands and it only gave me relief for a few weeks. I also have pain in both of my big toes. I had an X-ray on one foot a few months ago because of an injury and they noted arthritis. I also have occasional stiffness and pain in both knees and both hips.  

I just had blood work done 3 times because my eosinophil count was almost 5 times more than normal which can be an indicator of inflammation. I just had the 3rd blood work done yesterday and they are almost back to the normal range. 

I have Crohn’s disease but I don’t have any symptoms of being in a flare. 

The things that make me think it’s not RA is that I have no swelling, redness, or hotness in any of these places. 

Anyone have any insight?

[momof2]

You really need to see a rheumatologist. In my case, I have a combo of osteoarthritis and ankylosing spondylitis. Pain started in my late 20s. By my mid 40s, I was eligible to get both knees replaced — holding off because of Covid. Eventually, I will probably have both hips replaced.

But I hurt all the time and what part of me hurts the most varies from day to day.

ETA — while I have no idea what you have, I’ve been told my AS can be linked to Crohns and I am supposed to watch out for stomach issues.

[luckystar2]

Have you had rheumatoid factor done? You can still have RA if it’s negative but if it’s positive then it’s RA. I have RA but my Rheumatoid factor was negative when tested. I was diagnosed by symptoms only by a really great rheumatologist. I had a lot of joint swelling though which is a big hallmark of RA. I had to go on steroids for a while to bring swelling down and then started on plaquenil (which had a lot of talk last year - it’s hydroxychloroquine). I’ve taken it for a long time with success. I’d say my RA is in remission while on it but every time I’ve tried to reduce my dose too much or come off of it, the swelling/pain comes back.

I’d see what pcp says and see if they will test for rheumatoid factor. Without any swelling, I’m not sure it truly sounds like RA, but maybe see if you can get a referral to rheumatologist. Where I am, no rheumatologists will see you unless you have a referral. And even then it can be tough to get in.

[bcv513]

Holy crap I could have written this post!

I was just diagnosed with Crohn’s arthritis. Sometimes it’s called inflammatory arthritis. I had never heard of it, but apparently it’s the most common symptom outside the digestive tract.

Mine is in my thumbs also, and in my hips. It’s debilitating. I took my daughter to a local amusement park and I had to rent a scooter. That was a major blow point.

I was referred to a rheumatoid who did tons of blood work looking for RA and lupus. Those tests were all negative but my sedrate CRP and eosinophils were all high.

The good news is that the same drugs that treat crohn’s can treat this. I am waiting for my insurance to approve Humira right now. I was taking 6mp before.

Hope you get some answers! Feel free to PM if you want to chat.

[whitemerlot]

I agree to see a rheumatologist. There are so many possibilities.

My husband has a mixed connective tissue disease diagnosis. His symptoms were fatigue, hot red joints that would come and go, and Raynauds on his fingertips. He first had elbow pain that they told him was tennis elbow, then a couple months later, his foot got so swollen he could barely wear a shoe. It would then resolve. It took a while but he got a diagnosis from a rheumatologist. He takes a very small dose of methotrexate a week and has had no symptoms for over 5 years.

[stemmie]

Piling on to suggest a rheumatologist.

Rheumos are the experts in medication around these issues. My mom used to live in a resort/rural area and could only get in with a PCP who really wasn't on top of unusual presentations and current medication protocols. Since she's moved, been re-diagnosed and we got her a good rheumo she's doing so much better and on medications with fewer side effects.

[wowhead]

Thanks all! I already had an appointment scheduled with my PCP for other stuff. I’ll get a referral from her while I’m there. I’ve also got a call in to my GI.

bcv513 Thank you! Logically, I know this impacts my everyday life but I always feel like I’m just being a wuss and it really isn’t that bad.