Severe joint pain; stopped remicade; so sad

I was one of the lucky ones - Remi took care of a stubborn 9 month flare. But after 5 months I began to get severe joint pain in hands/wrists & stiff muscles / some weakness in my legs. I read previous posts on this, but I have heard more info & have different questions, so starting a new thread.
What happened: The pain began to get worse a week after my last infusion. It would move around, but mostly in hands/wrists, even up my forearms, & didn't emanate from one place consistently. It was at times painful, stiff, weak - couldn't hold anything, slight swelling. In the past 10 days, the pain became excruciating - couldn't use my hands or even lift my forearms to reposition slightly in bed. Very very scary....
Finally rheumatologist did tests. Only some test results back so far including positive ANA - 1:320 homogeneous; negative for RA; seems negative so far for lupus. Dr days it's not drug-induced lupus. Waiting for the rest of results, including Remi antibody test.
In the meantime I cancelled next Remi infusion (was supposed to be today) and 40 mg of prednisone has me moving again & much less pain. I want to taper but not sure how & worried pain will come back. Has this happened to anyone & do you have advice on tapering for this problem (rather than flare of blood/mucus).
Also, both the rheumy & GI specializing in UC think its an auto immune reaction to Remi. They said they are seeing similar symptoms esp within first 6 months of treatment. Also they see it occurring more often when Remi is administered as mono therapy (no concurrent 6mp - for example- which I'm allergic to -- and no concurrent solumedrol (sp?) - GI didn't want me to take unnecessary steroids). So I was more vulnerable to this, in retrospect. If you are taking Remi, you may want to ask about this - I wish I had known!
As for moving forward, I feel such despair. They said the anti TNFs class of drugs, including humira, are causing similar problems. So I shouldn't take any of them. I don't know what to do next for maintenance for UC. I'm allergic to so many things - & so disappointed to lose my Remi liquid gold. (I tend to get delayed allergic reactions to drugs rather than immediate.) I was so hoping to do Remi long term.
Does anyone have a similar experience, or any suggestions? Looks like Vedo is a different kind of medication. But it's so new, that I'm concerned about side effects, while Remi has been in use for decades so relatively well known. Feeling such despair & hoping that you experienced folks can advise - or at least commiserate... Thanks for any thoughts you have to offer.

I seem to  be having experiences with remicade similar to yours, but I also take 6mp and get premeds (solumedrdrol, tylenot and benydryl) (since fourth infusion.  Joint and muscle pain and weakness first hit the knees, then the arms, now the neck and shoulders.  Also had severe increase in BP and vomiting after 4th infusion, and headaches after first three infusions and the last two. 

These reactions are all listed in the remicade brochure as signs of being allergic to remicade.  So my question is, if I am allergic, why give me solumedrol and benadryl to mask the allergy.  While it seemed to help slightly for a few infusions, I don't think it helps now. 

You are lucky you can at least talk to your GI.  Communication with mine is very poor.  Also, can't get into a rhematologist for another three months (six months from when I made the appointment). 

I will be talking to my new GI at appointment in August about alternatives, and whether stopping remicade means you can never successfully return to it.   Have been on remicade since April 2013.  It has also caused me severe constipation.   

 

I have severe pains from Remi. Doctors spent considerable time ruling everything out last year, so I can only assume (with high certainty) that the Remi is causing this.

I don't have an answer as far as switching drugs go... but I do medicate the pain away.

My pains are worst in the morning. I take two tramadol (50 mg each), two tylenol, and two lomotil. Then I go back to bed for an hour. After they kick in I am able to get out of bed easily... whereas without the pain meds I literally have a hard time moving in bed due to the pain.

After six hours I take another dose of all those pills... and that gets me through the day usually. Sometimes I take one more tramadol later in the day, but it keeps me up at night (like tonight), so I try not to do that too much.

All these pains started about 5-6 months after being on Remicade. I am not on 6mp or Imuran. I began Imuran a couple months before I started having these pains, and then stopped a month after because I thought I was getting sick (thought the pains were mono or something similar) too often. Since then I haven't been back on Imuran and am doing fine UC wise.

One time last spring (year ago) I tried delaying my infusion and began to flare almost immediately. That wasn't fun.

So, I'm just being patient with things. I'm in a stress-filled situation in my life at the moment, so I'll see how the pains are once I'm through it. They usually lessen some when I'm not stressed.

My doctor has said we can switch me to Simponi or Humira if I want, because I've had to deal with these pains too long. There is a chance that I'm reacting to the mouse protein part of Remicade and that one of those other drugs will help.

Vedolizumab is another great option, so keep that in your pocket. It's different than the systemic anti-TNF drugs, so it may help both of us without causing the pains.

Also, I do get severe joint pain... but only when I do repeat motions for a bit. I can't lift weights anymore, and doing things like digging (I made my wife some raised bed gardens this year) takes patience as I need to give my elbows plenty of rest so they don't kill me. Man those pains hurt!

This reply is scattered, but you aren't alone. If you have any questions please ask and I'll try to get on here and respond.

PS:
-I did the Remicade antibody test and it was well within the normal range. So, it's more like I have an intolerance than antibodies to it... if that makes sense.

Thanks so much for your encouragement. I'm SO hoping the absence of remicade won't lead to another flare. I will let you know.

I wonder how long remicade stays in our system. Does anyone know??? (My last infusion was nine wks ago. Maybe the Pred will help until I figure out what's next.)

When I see the dr on Friday, I'll ask if they know what's causing the joint pain. My impression from our initial appointment is that it wasn't the mouse protein in Remi per se but it was that some of our bodies can't process the core mechanism of the anti-TNFs and have this kind of delayed reaction once it builds up. (I followed up & saw a few articles about this in rheumatology medical journals.) Also, I'm not sure how to think about it. Some folks may consider severe joint pain as a side effect, my own feeling is that it's more of an allergic reaction (the body is saying this stuff is unacceptable). I suppose there are technical definitions as to what's what, but the bottom line is whether one is willing to live with it.

Thoreau, I'm in awe of your willingness to persevere. You seem heroic. And how did you get those stronger pain meds? (I was given only Tylenol with codeine. Didn't help at all.)

I'm sure others are dealing with this challenge. Wondering if I'm too quick to stop Remi. I will keep you posted & hope others do the same. My sense is the drs are well intentioned and 'unevenly informed', so I deeply value the daily experience of our fellow UC'rs....

Canada Mark - thanks for letting us know. So which maintenance med did you move on to after Remi?

Contentprof What is the positive ANA test 1:320 homogeneous?  I am not familiar with that.  I had the remi antibody test and it was ok, so don't count on much from that test.  My first GI doc very quickly prescribed ultram, but I never took it.  Worried about the side effects and all pain meds cause constipation for me.  And severe constipation is one of the problems I have had since starting remi. 

Thoreau have you decided to stay with the remi afterall? 

Sorry to hear about the dilemma. Im on the verge of Remi and obviously not too thrilled. I have read about anecdotal reports of permanent headaches after quitting remi, but not necessarily joint pain. I hope it works out for you, and wish I had something better to suggest.

FWIW, as Im sure you are aware, there is LDN, nicotine, medicinal marijuana, FTs, helminth therapy, and a host of other things out there that are worth trying if you haven't given them a shot.

Quick update: Antibody test came back positive, so no more Remicade for sure. (Prometheus turned it around in 7 days, not the 2 wks I expected.) I wonder how many others are still taking remicade but it's not having therapeutic value or protecting from flares. If I hadn't developed the pain, I wouldn't have requested the test. Who knows how long the antibodies have been there.... I think it's possible to have them without signs of a reaction of some sort.

Symptoms: Joint pains are worse (traveled up from wrists/hands to shoulders) even on 20mg prednisone. Canada Mark called these "traveling pains" - "at times debilitating." Got that right!

contentprof  Very interesting that you have developed antibodies to remi.  But was it still working on the UC despite the pain? My last antibody test was in March, so I wonder if I now have developed antibodies too.   

Sorry you have to stop remi, but at least the decision is made for you and you do not have to struggle with the "what ifs".  What are you going to try now?  Are you going to go "cold turky" for a while to see what happens?  Such very hard choices since we have so very few options. 

Wishing you the best in making your decision as to the next step and please keep us informed.   

Hello fellow UC friends, I have a quick update.
Good news is that severe joint pain gradually got better with 40 mg prednisone, & the pain migrated from hands/wrists to shoulders, elbows, etc. After a few weeks it's still here but much better. I will need to begin to taper prednisone soon, so concerned it will return. Fingers crossed! Thinking positive!
The bad news is that my doctors are still puzzling over several disturbing test results-- very high anti-dsDNA, positive ANA, positive p-ANCA, etc. And have ordered yet more tests. I've been searching widely on related forums here as well as medical journals to learn about what these results may mean - lupus, vasculitus, etc. (Oh - and yes by the way, my antibody test for remicade was positive too.)
What I have learned is genuinely eye-opening. The potential harmful effects of the anti-TNFs for contributing to other auto-immune diseases are well-documented through many studies and meta-analyses. When I was scared to take remicade, it was due to lymphoma; that risk is so low that it seemed worth the risk. So I was willing. What I didn't realize was the many other auto-immune diseases that this class of drugs can trigger. And/or as some theorize that we are just more vulnerable to them all. Hard to say what causes what, but the correlations are undisputed.
In any case I just want to make sure we can all make informed decisions. In retrospect I was suffering with a long flare & remicade stopped it. I don't regret that decision. But, for what it's worth, I'm also glad the rheumatologist had me stop taking remicade as soon as the joint pains were severe and I couldn't function. My chapter with remicade is over. And I personally won't do any other anti-TNFs.
I know we don't have a lot of options (I'm allergic to all the other UC drugs except cortenemas), and all of the drugs have side effects and potential for severe adverse reactions. Entyvio is new and promising, but it will take years of experience to learn what it will do to us. Thanks to those of you who are brave and jumping in right away. I am pretty sure I will soon be joining you, once we get this situation managed.
I just want all of my fellow travelers to know these other diseases - in addition to having UC - are indeed very real and scary. I'm feeling overwhelmed trying to manage it all post-remicade. Feeling grateful to have access to medical specialists who care and most of all grateful for your continued support. Please send good thoughts my way at this scary time.

Thanks.

To UC folks: Here's the diagnosis now. My docs are calling it ATIL, Anti TNF Induced Lupus, which is very specific to the anti-TNFs and more severe lupus-like symptoms compared to regular (DIL) Drug Induced Lupus. I Found a bunch of articles documenting it over the past decade, most articles saying it resolved for many folks but not resolving for all and taking varying timeframes. They are still speculating as to what predisposes some of us to such severe joint pains as well as serological signs of trouble. Here's one article that may be of interest.

Beigel F, Schnitzler F, Paul Laubender R, et al. Formation of antinuclear and double-strand DNA antibodies and frequency of lupus-like syndrome in anti-TNF-alpha antibody-treated patients with
inflammatory bowel disease. Inflammatory bowel diseases 2011;17:91-8.

I am also showing signs of neuropathy which can be part of ATIL. So next step is MRI of neck. Fortunately no UC flare (yet) without a maintenance drug. Researching Entyvio which in any case isn't available yet where I live....

Content,

Thanks for posting an update on here.

I have the really bad pains every day still, and am certainly sensitive to cold and hot temperatures. For the most part I love to be warm, and hate to be cold. However, I can't stand a really hot shower, nor a cold one.

From my experiences with UC I would guess your nerve problems are more drug related or from something else other than UC.

Nope, still on it Soy. The pains are worth the remission at this point.