Horrible Pains On Remicade - Any Solutions?

I was waiting for somebody else to reply first before I nagged you about switching biologics, but they haven't, so... >_>

You need to switch. Period. The pain you are having is not an acceptable side-effect. I can see you saying now that it's okay if you take Tramadol. Tylenol, maybe; Tramadol, no. I know you struggle with depressive thoughts and I wouldn't be surprised if chronic use of an opioid painkiller was making them worse.

There are at least 3 more biologics you can try: Humira, Simponi and Vedolizumab. You may even be able to try Cimzia; not sure if that is licensed for UC or not. That said, if 4 biologics don't work for you, then I think you can safely forget about Cimzia. The chances of having identical pains with all 4 biologics are remote. There's one woman on the Crohn's board who got atrocious headaches on Humira, but was fine with Cimzia. Side-effects tend to vary from med to med, even when they do a very similar thing.

Worst case scenario: you go through the biologics one by one and end up having surgery. Well, you are thinking about surgery already; it would hardly be a disastrous outcome, considering how most people with UC only wish they had had surgery sooner.

As far as future treatments are concerned, I don't know of anything major scheduled for release in the next 5 years. Maybe somebody else might know more on this front.

I agree! There are many other options to try that hopefully won't have these side effects. I hope you find a solution!

Hi,

I think you need to be tested for Remicade Induced Lupus. If this is the diagnosis, you will need to discontinue the remicade and in my experience take 25 mg prednisone and 25 mg MTX. You will not take another drug ie Humira until you no longer have a positive ANA. For me this took approx. one year. I know there is a new drug out now (by infusion also) that is made for UC. You need to see a rhuemy asap. Take care.

Julia

Adding to Julia's post: I think it's not simply drug induced lupus, but it's AntiTNF Induced Lupus (ATIL) -there's lots of research on it. If it is ATIL, then it's not the mouse protein causing the symptoms Thoreau has been suffering from.
I got ATIL and neuropathy from Remicade. Still recovering. I had to start at 40 mg prednisone.
(See many details on my thread in UC Forum - what I experienced and learned - how they diagnosed it: 'Severe joint pains, stopped remicade, so sad')
I am sorry to see many of us battling these adverse reactions on top of the IBD....

Post Edited (Contentprof) : 9/1/2014 9:36:37 PM (GMT-6)

Julia Hill said...
Hi,

I think you need to be tested for Remicade Induced Lupus. If this is the diagnosis, you will need to discontinue the remicade and in my experience take 25 mg prednisone and 25 mg MTX. You will not take another drug ie Humira until you no longer have a positive ANA. For me this took approx. one year. I know there is a new drug out now (by infusion also) that is made for UC. You need to see a rhuemy asap. Take care.

Julia

I saw a Rheumatologist last year, he tested for several things, and could not find any answers. I am not familiar with the drug induced lupus testing, thought I've heard of the side effect. At this point it is probably a good idea to check in again with the Rheumy anyways, so if you have any info to guide me when there I have open ears.

sparkleplenty said...

For me, I'd rather deal with intestinal issues than the joint pain. Something about it is really hard to tolerate. I'm in my early 40s and it just seems like I'm too young. I hate having to think about oh my knees really hurt today I can't get groceries because I won't be able to carry them up the stairs. I also paint and do other creative activities and joint pain in my hands makes it really hard. I think the breaking point is different for everyone. You have to decide if keeping your colon in check is worth the pain you feel elsewhere. It's also possible that you'll remain in remission after stopping remicade.

Hey Sparkle. Weighing the pains vs the intestinal issues is hard. I prefer the pains personally since I'm still able to go out in the world with them. With the intestinal issues I feel housebound at times, which is really hard to deal with.

I don't know how I'd do if I stopped the Remicade and didn't do another biologic. Before Remicade I was hit and miss as far as feeling okay goes. I was trying all sorts of supplements and alternative treatments, and had one period of a few months where I was really in what I called a remission. But, it didn't last.

Here's second one of two. I hope it helps your diagnosis. Things may have changed in a year - your ANA test?
8/18/14 to UC folks: In another thread, I was asked what tests determined cause of my severe joint pain. Disclaimer–I’m not a doctor. I just read a lot of medical articles to follow my doctors’ thinking and ask questions. So what I say here may not be 100% correct. It’s what I think I learned.
Severe joint pains can have several causes:
1-Extra-intestinal manifestation of UC (IBD more generally). It’s easy for docs to interpret our pain as just that, and give us medication to make it more tolerable. Some of patients with make a shorter interval (do remicade earlier than planned) to reduce joint pain, only to have it return after a few weeks.
2-Side effect of a medication (like we may get headache, dizziness, nausea to a drug). We whether it’s worth it (ask ourselves: do benefits outweigh yucky side effects).
3-Infusion reactions – immediate (ex. Anaphylaxis, hives) or delayed (ex. fatigue, joint pain, muscle aches, fever, for a few days). Can be mild, moderate, severe. We take Remicade pre-meds to prevent immediate. I don’t know if anything prevents these delayed reactions.
4-Antibodies to Remicade can show up as joint pains, but it’s also possible there are no clinical signs that antibiodies have formed (except for perhaps a flare). Definitive blood test can show it specifically. If positive, drug is ineffective, so it’s a waste to take it. More important, we aren’t getting maintenance drug we need.
5-Adverse reactions to Remicade – can be acute (w/in 24 hrs) or delayed. Mine was delayed, and it felt cumulative. I was diagnosed as Anit-TNF drug induced lupus (ATIL) and polyneuropathy. All symptoms better on prednisone. No pain after 6 wks still neuropathy & weakness but feeling better. Most (but not all) cases resolve, studies show. Will retest labs later, but it can take months or years for labs to return to normal.

How did they diagnose this? Thinking back, clinical features seem most important – severe pain (excruciating, debilitating pain). Very bad 5 months into Remicade - in legs, knees, feet, with pain, stiffness, mild swelling, poor balance, weakness. By 6 months couldn’t move hands/fingers, arms, then up shoulders and neck. Worst were hands/wrists. Was it joint pain, muscle pain, nerve pain? Hard to sort out when pain is so severe. Also, pain was constant in some areas, but some pain moved around. (I consulted Lupus and Fibro sites here to see aboutsymptoms. Indeed, some were similar.) I read studies and meta-analyses. Here’s what I found out – again with disclaimer of “I’m not a doctor” so it may not be 100% correct. I hope to save you hours and hours I spent searching, so you can have more informed conversations with your doctors.

TNF-alpha inhibitors are known to bring on new onset or exacerbate underlying disorders (ex lupus, neurological disorders associated with demyelination, heart failure, myalgias, lymphoma, can awaken Hep B, etc.). We know this before starting (They disclose it). We take our chances based on the odds.

Lab work: I don’t know doctors’ protocol, and some are more data-driven than others. I think they first rule out infection, since Remicade weakens immune systems. They do CBC w/diff, metabolic panel, lots of specific tests: ESR, Sed rate (By the way, sometimes w/UC, neither ESR or Sed Rate may be elevated, especially if it’s very inflamed distally). Also Creatinine, C-reactive Protein, ANA (one indicator of lupus-like reactions),etc. They may test to see if we have formed other neutralizing antibodies – dsDNA, IgG, SS-A/Ro, Sm, RNP, scl, Jo1, p-ANCA, MPO, PR3, etc. Various labs if positive could suggest types of connective tissue diseases that may be at work with myalgias, vasculitis, etc. They want to be sure our organs aren’t damaged, esp kidneys…. Lot of folks have skin manifestations (I didn’t). Labs aren’t definitive. There are always ranges (like 30 to 100% of people with X are positive on Y test). So serologies give them a sense of what may be going on and what to rule out. At one point, I couldn’t turn my head due to neck pain. Ruled out meningitis. MRI of neck was done to check for demyelination. Negative, fortunately. An EMG and nerve conduction study was to investigate possible myopathy vs polyneuropathy. Affirmative for the latter. (They don’t know how to cure it, only how to medicate to make it less painful…. Tried some medications but couldn’t tolerate side effects ….)

It’s clinical symptoms alongside labs that lead them to diagnose if we have another autoimmune disease in addition to UC. (By the way, some tests can be positive anyway in IBD.) With severe pain, I had several high positive tests common for people having lupus-like symptoms. The fact that they came on a few months into remicade (within first 6 months) is typical if it is going to happen, but it can be later.

So I had those “paradoxical adverse events associated with Anti-TNF Agents”. If you Google that or Anti TNF Induced lupus (ATIL), you’ll see articles dating back from 2003 thru 2014. t’s still only a VERY SMALL percentage of people who have these reactions, let alone severe ones, like mine (and same for Thoreau, Happyday, Soystud, Canada Mark, if that's what you guys have...). Remicade (infliximab) seems to have one of the higher %s and a broader range of clinical symptoms than the others in this class of drugs. I still have no regrets about taking it, and hoping prednisone & time will resolve it.

And I'm still searching for my next UC maintenance drug, possibly Entyvio, but I see that it caused joint pains in the clinical trials... I hope this long post is helpful!

Good luck with your decision Thoreau. I know it's not an easy one to make.

Hey Joey -

It's been a loooong time since I've been on this site. Sadly, I still have the chronic pains. I'll go into a little detail for you in case it helps at all.

I did stop Remicade. My last dose was August 2014. I had started it January 2012, and by August 2012 I was experiencing the migrating pains. I think it's important to note that I did not have these pains initially. I began Imuran concurrent with Remicade in late May or June that year. (I had initially avoided due to the increased risk of lymphoma when taking both of those.) Stopping Remicade was a total gamble for me. By the time I got to that point I'd been to several doctors (GP, immunology, infection disease, rheumatology, pain management) without anyone being able to tell me what was going on. I was desperate to stop hurting. My plan was to see if I could maintain a remission on lesser medications. My backup plan was I believe Entyvio which had just recently been approved (which made me feel I could take this gamble). But, I was prepared to have j-pouch surgery if it would mean stopping Remicade and thus my pains being gone (that was my line of thinking).

What ended up happening was a blessing in the midst of this negative experience. I saw a new GP that I did not like, and only visited a couple times. But, she was a gluten hater and recommended I stop eating anything with gluten. I did that, and somehow determined that that was actually what was causing my UC. I know it sounds like a farce, but as long as I remain gluten-free I retain remission. I have not been on any UC meds for over five years now and am in a complete remission. I just take lomotil to help slow down my gut a little as I think I'll always have a bit of IBS. I've been scoped at least twice since then and both times my GI doctor has said if he didn't know my history he wouldn't know that I had had UC. This is coming from me, a person who spent a TON of time trying things including a short run with the Specific Carbohydrate Diet (think that's what it was called). I had not retained a remission in over a decade of having the disease, no matter the medicine. Remicade helped but it wasn't perfect. So... it's been amazing to have eliminated UC from the realm of my worries.

Anyways, back to the pains... I initially (in 2012 after they started in summer) thought they were related to an illness. I have tons of records from back then. I strongly considered it being EBV (Epstein Barr Virus). I had several tests that showed active infection, including a viral replication test that showed it being active. These tests spanned somewhere around 1.5 years. However, I also had tests showing it wasn't active at other times. But, the pains and way I felt were (and still are) a lot like the symptoms of EBV. I get achy like a person does when they are sick. I just want to be warm and lay still.

I saw 11 physicians locally, and then went to Mayo in summer 2015. I saw a rheumatologist at Mayo, who said that sometimes these pains do happen when going on Remicade, but they should resolve when not on it anymore. I was on Tramadol at that time (and still am), and his theory was that my body had "re-wired" itself in what he called "central sensitization" and that if I just got off the drugs that rewiring may go away. So, I weaned myself off the pain killers and spent at least 30 days without any drugs. It was miserable, and I did not improve. At that point I decided to go back onto Tramadol and just keep managing that way.

In 2016 I had a complete workup done again at a local hospital. They did everything including bone scans and tons of nerve testing, and still did not find anything. That was my last major attempt to look into this.

I did need to change GPs a couple years ago after mine moved away, and found one that was initially skeptical of me needing pain meds. But, I've since earned her trust. She sent me to a specialty pain physician locally here who actually said that new theories are coming out that there are links between EBV and these types of chronic pain. This was entirely brought up by them. I had long ago given up the EBV theory since nobody was listening to me with it. The pain doctor didn't want me to stop the Tramadol though, as it was helping. They have some additional treatments they said I could eventually try (some sort of ketamine injection thing I think). I have not done so yet.

I'm over seven years into having these pains. I do not know the cause for sure, and definitely do not know how to get rid of them. My daily regimen is setting an alarm for 4:30 AM which is my first dose of Tramadol/Tylenol/Lomotil. Then I go back to sleep and let those meds kick in until I wake around 7:00 AM (otherwise it's very hard for me to get out of bed). My next dose I take at 10:00 AM. Then the third is at 4:00 PM. I do not take an evening dose, as Tramadol keeps me awake. Other things that help in a pinch are caffeinated beverages and junk food when really hurting. Heat helps a lot too. And rest.

I don't know how it will ever resolve. I had a lot of stressful career and family situations happen between 2013 until recently. I haven't had the opportunity to be away from work enough to try stopping my pain meds again. My old GP who I loved and is the one that sent me to Mayo had said I should research into how Tramadol works, and see if that turns up any leads as to what exactly it's doing that helps me so much. Maybe that can help me narrow down potential causes. I just haven't had the time to do that sort of research anymore. I had sold a previous company and purchased a new one in 2017 which has consumed my time since.

I personally would be hesitant to stop the Remicade unless you have a backup option that you're very confident will work for you. That's my advice for you, as unfortunately I have not seen my pains stop even though I've been off Remicade for 5+ years.

**I will say that it seems like I am maybe 30% better than I was way back then. So, maybe there was some correlation to Remicade. I'm not sure. I used to hurt so badly that just the effort to take my pain meds each morning was almost unbearable. Nowadays I can handle that pretty well about 75% of the time. But I always need that time to let them kick in before getting up.

I know this is long, but I wanted to be thorough in case it could help you. I found it to be very difficult to find any information when I was doing research on it years ago.

Post Edited (Thoreau) : 12/15/2019 11:40:42 PM (GMT-7)

Joey -

Have you had any other recurring illnesses or anything to go off of?

When my pains were starting I was getting sick often. I'd gotten an upper respiratory thing twice the month the pains started. Then was sick with something else quite bad within a month after that. Plus at one point I would get very short of breath and have to kind of gasp to catch my breathing up. My tonsils also began to swell up, and stayed that way until I had them removed the following year (I was 28 years old at the time).

My main theories have been...
-Chronic EBV
-Some nerve type issue (central nervous system issue caused from Remicade)
-Pain medicine "rewiring" my pain receptors
-Possibility of some hormone imbalance somehow related to my thyroid (one scan showed something about a partially calcified gland or area if I remember correctly)

What medications do you currently take besides Remicade? I personally take Tramadol, Tylenol, and Lomotil, all three times a day.

If you have a well-rated university hospital near you I would try the full workup similar to Mayo there first. I had mine done after Mayo, and felt they were more thorough at the local place.

You do want to be extra careful that there are no viruses causing these pains for you. Because I was having EBV symptoms they did a CT scan of my abdomen to look at my lymph-nodes they could not check manually. It was a precaution necessary to ensure that continuing on Remicade wouldn't further some issue like lymphoma.

As far as finding someone else with this problem... yeah... it was a very hard time when I first came down with it. It was especially hard when I was told by a couple doctors that essentially I just had anxiety. Luckily I found better doctors who knew that wasn't true. There's nothing worse than to hear that this pain is "all in your head."

Post Edited (Thoreau) : 12/16/2019 10:33:13 PM (GMT-7)

Yes, I had one rheumatologist ask me if I have anxiety issues. I have no anxiety issues. I just have pain issues.

I did get a referral to go see a neurologist too. I haven't to date. I kind of feel some type of guilt in that I am wasting people's/dr's time on trying to figure this out. I suppose I really shouldn't think or feel that.

I have tried Tylenol and muscle relaxants, which really do nothing. I haven't moved 'up' to more serious pain meds. I have always just waited out the myalgia relapses as I knew they would eventually ease off. Although, this most recent round of myalgia has been a few months now. I may take a swing a predinisone (lots of experience on that drug from when my colitis was active). Did you try prednisone for your issues?

I am hoping that pushing back my infusion date will offer some respite.

I live in Canada - we don't have Mayo clinics here. I think going to a Mayo clinic is expensive?

I'm not entirely certain about the your response on anxiety - I have fibro and I don't have anxiety. I only have pain issues as well, and I'm 99% certain that it's from pain meds (IV dilaudid during hospital stays) messing up my brain's wiring.

I wasn't thinking serious pain meds, but I was thinking more like Gabapentin or Cymbalta.