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Still on Remicade

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Posted 5/7/2023 1:53 PM (GMT 0)
Well I’m back on with update on Remicade. In remission which is great. Taking it every 4 weeks. Trying to put up with the side effects. I’m not sure I can anymore. Just had the infusion on the 4th of this month. 2 days later my hand is so swollen can’t see my veins or wrist bone. Can’t put a watch on. Last month i had the same but with jaw pain too. Have joint pain which i can deal with. This swelling of my hands is another story. I’m a massage therapist . Not sure I’ll be able to work again.
Really wanted this to work out. I think my husband is tired of hearing me complain. Everyday there is something else. Guess I will be calling specialist tomorrow.

Faith
Posted 5/7/2023 4:23 PM (GMT 0)
Faith, if you have a patient portal I would send a good photo of your hand to the dr before calling him. When you do call, it's time to discuss a change in meds & a referral to a rheumatologist for a consult. If for some reason your gi doesn't feel the need for a rheumatologist, this is something your pcp can handle. This type of a side effect is not one to ignore or try to put up with, you are past that time.

Keep us posted.
Posted 5/7/2023 4:45 PM (GMT 0)
Susie, went to a rheumatologist in the last 2 months. She tested for everything. Had scans and X-rays of my hands and SI joint. All the tests showed osteoarthritis not RA. All the blood work came back ok. Looked at all the side effects of Remicade some were common some were more serious. Swelling of the hands and face weren’t on the common ones. I had the throat tightening one of the months. I’m going to go on the portal either today or in the morning since it won’t be read until then. I even went on Zoloft because all of this is just screwing with me mentally, .

Faith
Posted 5/7/2023 11:13 PM (GMT 0)
Good to read that you have been checked by the rheumatologist. Don't discount this not being related to Remicade because it's not listed on the site. Call your dr tomorrow, perhaps it's time for an appt to discuss this.

Keep us posted.
Posted 5/8/2023 3:04 AM (GMT 0)
I think it is related to Remicade. Most definitely. Might be better to go on portal and ask to speak with his nurse. This chatting with them isn’t great. I dont think i come across as it being as bad. Not sure?
Posted 5/8/2023 4:52 PM (GMT 0)
Do you take any pre-meds with your infusion? If not, you might want to ask your doc about that. I have heard that some people get a benedryl infusion right before the remicade to prevent reactions. Do the side effects you are experiencing go away after a few days?
Posted 5/9/2023 3:55 AM (GMT 0)
I'd absolutely talk to my doctor.

Premeds help me.

Clo
Posted 5/10/2023 9:54 PM (GMT 0)
I’m back after talking to GI. Swelling subsided. Just a lot of joint aches. He wants my levels checked again for antibodies. He sent in a script for Sulfasalazine. Said if I’m in a lot of pain take 2 twice a day. Have no clue what kind of drug it us? Trying to read up on it.

about the premeds. At infusion center they give me 50 mg of Benadryl. 650 mg of Tylenol and some kind of steroid. Also large bag of fluids. Slowed it down to 3 hours. I’m there like 5 hours.

Faith
Posted 5/10/2023 10:04 PM (GMT 0)
I guess he’s not so quick for me to stop the drug. Anybody take sulfasalazine.
I even sent pictures of my hands.
Faith
Posted 5/10/2023 11:57 PM (GMT 0)
I think that's an older UC med that can also help joint pain.

So sorry you are dealing with this. It sucks that you found something that is working for your UC but now you have this bad side effect to deal with. Hopefully the new med can help,
Posted 5/11/2023 12:35 AM (GMT 0)
The Sulfasalazine is in addition to the remi. The GI said to use as needed for pain.
Posted 5/11/2023 4:00 AM (GMT 0)
Sulfasalazine is a DMRD, used to treat RA, AS & UC inflammation. If you go to Drugs.com it clearly states this medication takes a while to build up in the body to be effective. A script saying to take as needed makes absolutely no sense at all.

When your hand swells up how long does it stay swollen?
Posted 5/11/2023 11:07 AM (GMT 0)
Hands swell for about 2-3 days then just left with joint pain in thumbs and off and on hands. They usually swell 1-2 days after infusion. Keeping track this month,
Posted 5/21/2023 2:26 PM (GMT 0)
Still on Remicade . Having another blood level antibody test next week before next infusion. This arthritis is really getting to me. All tests came back saying i have osteoarthritis. Can’t take that sulfasalazine. Massive headache and stomach pain. Not sure whats next. Seems never ending.
Posted 5/21/2023 10:42 PM (GMT 0)
Hi, Faithmac-- sorry to read that you have this vexing hand problem. I recall that you had accident complications not that long ago-- so you definitely deserve a break healthwise! RE sulfasalazine: it's an old form of 5-ASA, mesalamine bonded to sulfa to get it as far as intestines w/o degrading beforehand in the digestive process. It is hard on the stomach unless taken in enteric-coated tabs. That I did in 1980s when it was the only alternative to steroids! But still, it can give an unpleasant aftertaste and contribute to photosensitivity; one should drink plenty of plain water while on it. HOWEVER, it has helped some forum members to deal with osteoarthritis discomfort; I remember reading past posts by Jano (in PA) reporting that positive result. (In case you want to look up her posts in the archive; she may not have updated us for a few yrs.) Her situation stayed in my mind because she was suffering more from the joint aches/pains than from gut symptoms, and wrote that her gastro RXed sulfasalazine precisely for that reason. (I think she took the coated tabs.) Best wishes for you to overcome this latest nuisance. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/22/2023 2:37 AM (GMT 0)
Thanks Old Hat, I’ve been complaining to the GI of swelling of my hands and joint pain. Now it seems i have it in more than just my hands. I believe it’s a side effect of the Remicade. Seemed to really get bad since taking it. Never had anything like this with entyvio. Could not open a bottle of water today. I’m pretty strong especially in my hands. Been a Massage Therapist for 20 years. My blood tests have been coming back fine. The script was for joint pain. Really felt horrible taking it. They are not coated I believe. Pretty large pills. So i stopped taking them. Have another blood test for levels and antibodies next week. I think it might be time to switch to something else besides Remicade. Really too bad it has me in remission with the UC.
Faith
Posted 5/22/2023 10:32 PM (GMT 0)
I've seen other people here in the past who had to stop using remicade because of joint pain. Maybe one of them will see your post and offer some advise. You've gone through a lot of meds. Any idea what you would want to try next? I hear good things about Xeljanz and more people are starting Rinvoq so they might be options for you if you need to stop Remi
Posted 5/22/2023 10:42 PM (GMT 0)
Called today the GI , he called in methotrexate subcutaneous 0.6 ml weekly and folic acid daily. Thought he was going to prescribe something else besides an add on to the Remicade. Hope it helps. So uncomfortable!
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