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REMICADE AND INFLAMATORY ARTHRITIS ISSUE

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Rheumatoid Arthritis
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Posted 4/23/2012 4:55 AM (GMT 0)
 Hello,

I started REMICADE last June and it was started because I have Ulcerative Colitis. I noticed a few months after starting Remicade injections my joints all started to hurt- feet, hands, knees. Mostly its in my finger and hands. I thought Remicade was  for Arthritis also?

So wondering why my joints hurt on the drug.

I'm going to see an RA DOCTOR. I cant take much more of this pain.

I take Ibeprofin but its not good on my liver so I only take it when I'm in very bad pain.

Thanks in advance for any info you can give.

Donna rolleyes

Posted 4/23/2012 8:04 PM (GMT 0)
There are several side effects that can occur with Remicade. You may have developed antibodies to either the protein in Remicade or antibodies that cause SLE. The rheumy can test for either of those. Sorry you are so miserable.
Posted 4/25/2012 2:56 AM (GMT 0)
Something similar happened to me: I was on Remicaid for two years for Crohns' disease. I noticed that my joints were really sore and my feet were swollen a week or two before my next infusion. I am also a professional pianist/organist so my doc and I shrugged it off that I over-did something. (At that time, I typically practiced 5 hours a day.) The same thing happened before the following infusion, and after that infusion it came back two weeks later 10-times worse attacking all my joints. My advice to you is to see a rheumatologist ASAP so you do not have to go through what I did. (I don't want to discourage you with my details) I used Methotrexate to counteract the remicaid, and stopped the infusions. It takes time to get this next drug working, so the sooner you can see your doc, the better. Switching biologics was another thing that was an option we had to help with the pain, and it might have faster results.
This was over a year ago and I am doing better now, although officially diagnosed with RA. From what I understand, if it is just a side-effect of the remicaid, it will go away and one is able to stop the arthritis drugs, but for me the pain came back when we tried that. With my Crohns history, Rheumatoid arthritis is very common.
It is interesting for you to note that you feel it in your finger...I have one finger that will swell up like a big sausage and won't bend! My doc does not seem to know why. Being a pianist, there are days I want to inject it with steroids!
I hope you find some relief...I know exactly what it feels like and how frustrating it can be. Just because my joint pain turned out to be RA doesn't mean yours will! Hopefully you will find an answer soon and will be in less pain. Depending on when your appt is, I'd see if that dr has a cancellation...don't sit back and wait like I did!
Posted 4/25/2012 3:17 AM (GMT 0)
The sooner you can get into your doctor the better...another medicine might work better for
you...Hope your feeling better soon, many well wishes...keep us posted as we do care...
Posted 4/25/2012 5:39 AM (GMT 0)
wow thanks everyone for the well wishes. it just seems like if its not one health issue its another. i'm going to start going to a weight management center to help me get healthier in a possitive way. lose some weight may help with the joint issues as well.

yes psalm18:30
being on the remicaid can be tough, i hear a lot of people who are on it say they have joint issues. i did have a huge flare up 7 months prior to starting it so i think the remicaid just made it worse.

we'll see. i'll be seeing the doctor soon about the RA. i have meds to take from my sports med doc i've been taking and its helped. but being on so many meds i'm just tired. i'm 40 yrs old and 200 yrs old. :-(

i'm staying strong though.
thanks again everyone.
donna
Posted 4/27/2012 3:11 PM (GMT 0)
Hey Jovigirl,

I'm having a very similar situation as well. I've had UC since I was 18 and I've been on Remicade (every 8 weeks) for the past 6 years. I was doing well with Remicade for around 5 years then I started getting pains in my joints and tendons, it started slow and increased over the past year to where I was having pretty bad pains and swelling in my knees, feet, hands and shoulder joints. Even had swelling in odd places, like up above my eye socket. My pains would also move around, I'd have pain in my right knee pretty bad for a day or two then it would go away.

My primary GI ran a blood test and found anti-bodies had developed against Remicade, so I'm stopping Remicade and my last infusion was 10 weeks ago. My GI explained that the swelling and joint pains could be caused by the anti-bodies. He basically said they could clump up together and cause pains around the joints and in muscles. I got another opinion and the other doctor said he thought it was the UC causing arthritic type pains. My primary GI ran a blood test to check for RA and it came back negative, but I'm still going to see an RA doctor to get another opinion.

Since I've stopped taking Remicade the joint pains have died down in severity a good amount. Between 5 and 6 weeks after my last infusion I could barely walk due to pain in knees and feet. I also play bass guitar in a band and the swelling/pains in my fingers were so bad at one point that I couldn't play a gig. Now that I'm about 10 weeks out from my last infusion I still have pains but they feel like they are slowly going away.

I'm still trying to figure my situation out but from my experiences and feelings so far, I believe Remicade is the cause of my joint/muscle pains and it could be causing yours as well.

Hope this information helps and best of luck!
Posted 4/27/2012 10:26 PM (GMT 0)
Wow, I wished I would have known about this forum a long time ago! I was on Remicade for almost three years 2009-2011 for RA. I felt the best I had ever felt. Fast forward to spring last year and I had to go off due to having unrelated surgery. At that time, I was told I had developed "an antibody" to Remicade so when I go back on it might not continue to work. about three weeks ago I had my "first" treatment of Remicade. I did well during the infusion, however at the end my blood pressure was just slightly elevated. Within the next few days, my throat became sore, lymph glands swollen, and ran a slight fever. My RA was flared before my infusion but by day four I noticed I was feeling horribly flared. For the next week, I felt like I had the flu and really slept most of the day. My doctor increased my steroids because the pain was so horrible and basically just thought I was flaring. Fast forward to the beginning of this week, received my second Remicade infusion with steroids/pre-meds. Within minutes, felt like I was on fire. I turned bright red, started to become short of breath. The infusion was stopped and I was given another dose of Benadryl. As a few more minutes passed, I experienced the most horrible pain in my back and within minutes it went to my chest. My blood pressure was extremely elevated and I was transported to the ER by ambulance. I had to stay in the hospital until my heart enzymes, blood pressure resolved to normal.

I will admit this was the scariest thing that has happened to me. I don't recount my story to scare others as Remicade worked well for me for three years.

I am amazed at how others have experienced very similar side effects at some point during their treatment.

My question, for anyone willing to respond, how do you move forward after a severe reaction? The thought of going on another medicine (I have been on Humira with no results) honestly scares me. Any suggestions for resolving this anxiety?

Thanks
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