Arthritis after Remicade. what to do?

I am having a rough day/week due to arthritis after an increased dose of Remicade earlier in the year. Fatigue and pain. They did an RA test 3 years ago before these symptoms so the rheumatologist doesn't think it is RA. Has all the symptoms though. Hoping it isn't . He did put me on 30 mg prednisone at the time it almost took away all the pain. I titrated down. The pain and stiffness and fatigue all come back when I stop. I am now on Methotrexate and Remicade but it doesn't seem to be helping the pain. UC symptoms pretty good. I started 10 mg of prednisone yesterday and today but it isn't not helping yet. I am wondering if the Remicade has caused this.

I am eating plant based but have been eating more sugar. I am really going to work on decreasing that and gluten. I have 4 kids and started a great new job as a clinic director but am SO exhausted at the end of the day. I appreciate any thoughts or suggestions.

I think with RA joints tend to be red, hot to the touch, and swollen. WI Chica, if your UC wasn't in remission I'd suggest you do what I'm doing and try another medication to see if it can resolve the UC, joint problems and fatigue (as Humira did for me while it worked).

Is your UC in remission? Ie how good is 'pretty good'?

I agree with Keith. I would have my antibody levels checked.

Keep track of your joint pain for the next 2 infusions. My joint pain is much worse right after the Remicade infusion. It decreases at the 6 week mark....right when I usually go in. BTW...I was checked for RA and it was negative. My rheumatologist calls it Crohn's arthritis. Methotrexate helped very little with the arthritis but controlled my psoriasis and Pyoderma Gangrenosum. Lowering my dosage of Remicade did not seem to help.

My GI tract is in good shape now on Remicade. I still get very tired and have several extra intestinal symptoms that the Remicade does not address.

My GI, CRS, Rheumatologist, PCP and Infectious disease doctor all agreed that since the GI tract is healing and in good shape I should stay on Remicade. You have to decide if the treatment is the right one for you-please keep in mind that usually when you stop Remicade you can not go back on it.

Good luck!
Clo

Post Edited (clo2014) : 8/27/2021 11:21:14 PM (GMT-6)

I have had a few tests for antibodies and all is good there.

damo123 said...
Have you swelling? Have you morning stiffness? Are the issues symmetrical? Are the knuckles and middle joints of the fingers and hands involved?....these are the most direct initial symptoms of RA.

If you have asymmetrical, non-swelling, migratory joint issues with involvement of tendons and larger peripheral joints and even the back....these are indicative of SpA's of which IBD arthritis is one and for which current remission of bowel issues may not have anything direct to do with your joint issues.

It is also possible that the Remi is inducing the joint issues. Did the joint issues start before or after use of this? Have your Remi trough levels been checked together with a look for antibodies to the drug?

10mg of pred would not get you seeing major results if you had a joint flare...its low doze mainteance....you'd need 30mg - 40mg at the outset of a joint or bowel flare to dampen down the immune activity

Seems like its Joint Issue month on HealingWell currently!!!

Just getting back the the posts. in reponse-- Yes. Both hands are stiff and painful all through the night and morning. They are puffy. All fingers and all toes hurt along with the whole of both feet. the issues started after an increase of Remicade while also going from every 8 weeks to every 6 weeks. The Remicade levels were checked levels 2 times. The first one was when i had break through UC symptoms and receiving every 8 weeks was 3. They went to 6 weeks it was at a 5 so that is when they increased it and the joint pain began. I just had an infusion today so i am guessing I now need to wait another 6 weeks before they can check levels.

When i took the 30 mg of prednisone ALL the pain pretty much seemed to go away along with the intense fatigue. I went down to 5 then stopped then started again and stopped- titrating each time. I was getting pretty irritable but it may also be from the pain. I am also on 6mg of METHOTREXATE which i don't think is doing a whole lot.

If i keep taking prednisone how will I know if the Remicade is causing the issue. I am so thankful for all of you here. My husband just doesn't get it.

ks1905 said...
When I developed antibodies to Remicade I had all of those effects plus some others. I moved on to Humira, Cimzia, and Simponi with the same effects. I probably developed some allergy/antibody reaction to all Anti-tnf meds. My GI referred to it as "serum sickness".

It took about 90 days for all the effects to go away after I stopped anti-tnfs.

Probably the easiest thing to do is to have an antibody test for Remicade done. Back when I had the my issues insurance companies wouldn't cover the tests, I hope things have changed in the past decade or so.

I will talk to him. So what are you doing now as a treatment?

WI chica said...
I will talk to him. So what are you doing now as a treatment?

You’re looking to see if you have antibodies, not Remicade levels. Sounds like you’re having a reaction.

It’s in my signature. I’ve been using Stelara for the past 4+ years and it’s the best medication that I have used for my IBD since I was diagnosed with UC.

I get very similar joint issues -- hands, feet are slightly slightly swollen and stiff, and oftentimes my hips and knees hurt, too. I take 15mg of methotrexate a week and it works well. Everyone seems to think it's related to my UC, but we will see. I had my colon removed, and tried to come off of it but my rectum is still there and flaring, and within a few weeks the joint pain was back, so now I am taking it again