Severe joint pain; stopped remicade; so sad

It sounds like you have a game plan for yourself that you're following pretty well, Content.

If I were to stop Remi, I think I'd be either trying other biologics or getting surgery. The pains are worse for me with stress. I sold my business two weeks ago tomorrow, and am slowly transitioning. I'm going to take 1-4 years slowly wading through my life direction and desires, and then I'll choose a new path. Whatever way I head though, it will be with an aim to not have so much stress that my body gets ill.

I don't know if I mentioned this or not, but I take Tylenol, Tramadol, AND Lomotil together. I know the lomotil is to control my gut, but at this point it adds a boost of pain-killing that helps when combined with the other meds.

I hope you get your body back in better shape soon. :)

I have to get some sleep here. If you have any other questions just ask.

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 about symptoms. 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!

Just read it. Thanks. That's fascinating. This should give us hope. While There are plenty of researchers who continue to develop drugs for us within existing paradigms, here's one that's way out of the box. We need that kind of thinking - of folks who can connect new things in new ways! Cure seems inconceivable based on conventional thinking, but I'll hold out hope!

Contentprof

Thanks for the update and all the info you have shared over the last few months.  If not for you and thoreau, I probably would not have pursued the pain and weakness as far as I have. 

Glad you are feeling better and have not had a flare yet. 

I finally see the rhuemy tomorrow at which time we will hopefully explore all the things going on with me - joint and muscle pain and weakness, autoimmune hepatitis (have appt with hepatologist scheduled), adrenal adenomas (were there before, but endocrinologist thinks they may now be functioning), growing thyroid nodules (still have to schedule a fine needle biopsy), edema in right leg.  Would like to know how many of these problems are related to the UC and autoimmune problem and how many are related to drugs remicade and 6mp.  Autoimmune hepatitis is treated with 6mp like drug so I am really confused why this suddenly appeared. 

Hey vdyej! It sounds like you've dealt with a lot of struggle on Remicade. I am personally due for my every 8 weeks Remicade infusion next week, but am skipping it (with my GI's okay) to see if my very b ad body aches and joint pains go away. It is refreshing to me to hear that your pains went away soon after missing that dose.

However, it isn't good to hear that your insurance is acting like they are. I don't know the situation, but geesh do they not understand how we need to keep in a remission instead of just taking drugs whenever we feel like it?

I don't know what to tell you about the Remicade causing the joint pains, as far as what to do about it. For me, I wake up and ache all over in a mix of VERY strong pains and aches that leave me feeling like I cannot get out of bed even. I take prescription pain meds to deal with the pains, but am still struggling at times. As I go past my infusion due date without receiving more Remi, I hope to find that the pains do in fact go away. Then my options will be Humira, Simponi, Cimzia, Entyvio... or a little chance of regressing back to 6mp or Imuran type drugs.

I hope things work out for you very soon! Thanks for the post!

Thanks, Thoreau. I will be thrilled if I find I can stay in remission and cease taking Remicade - Remicade was great for me when I was near-death, but now that I have a higher quality-of-life standard - the side effects feel too much.

(Yeah, don't get me started about insurance companies, or doctors, for that matter...)

I'm very sorry to hear about your own pain and will pray for you.

Hi happyday :) I like your screen name, that's a good attitude. I'll pray for you, too.

The scalp lesions haven't gone away yet, but I don't think any new ones have formed. My scalp looks like a minefield - I think it's gonna be months or years before the damage sloughs off. Yuck! Plus, the darn patches itch and it's hard not to reflexively reach up and scratch them when I'm stressed. (PS - big chunks of hair come off with each sliver of detached scalp; thankfully my hairdresser has a strong stomach)

I feel a lot better having found this forum and met y'all. Doctors can be so infuriating when they write off real, painful side effects! I'm glad to know I'm not alone and that other people have been drawing the same connections.

awesome c man !

so are you still on some pred or off completely ?

Glad to hear about your health turnaround, Contentprof! Looking forward to seeing more updates on your improvement - very exciting! :)

Hey Content, I'm bumping this thread up with more info from my side of things...

I am presently 13+ weeks from my last Remicade infusion. I still have pretty severe body aches if I do not take Tramadol/Tylenol every 6 hours. My GI doctor says that the pains then cannot be from Remicade because it is out of my system.

I spoke to Remicade (the support phone number) and a lady told me about its half life. Essentially the medicines half-life is 7.7 to 9.5 days. This decrease in its presence can happen 5 to 7 times. So essentially the medicine can be in us between 38.5 to 66.5 days. These are reported numbers, and obviously there are probably a few that rank on either side of things there.

My GI says I can go on Humira now. This doesn't make sense to me if he says that my pains aren't from Remicade... but I don't want to take Remi again anyways so it's fine. To me going on Humira while I still have the pains would seem stupid, as then I couldn't distinguish what exactly was going on. However, I do not want to flare either...

I've told you before, that the Rheumatologist checked me over and said I didn't display signs of Lupus. He didn't run any more tests at that time. Previously he had checked my Vitamin D levels and also to see if there was any inflammation in my muscles, which there was not. I do not have any sensory issues so I am doubting I have the nerve thing you mentioned.

I see my options as either:
1. Go on another Anti-TNF drug.
2. Step back to an immunomodulator (6mp, Imuran, Methotrexate).
3. Go without medicines, or just take 5-ASA's again though they didn't help a ton.
4. Try Entyvio.
5. Try to somehow get LDN.

I'm readying myself to take some sort of action on this. I'm over five weeks late for a Remicade infusion and want to steady my situation before anything out of my control happens.

Do you think I should ask for prednisone to help alleviate the pains? Which doctor should I approach about that?

Content, thank you so much for the long and thoughtful reply! It makes such a huge difference to me to at least be able to occasionally relate to someone who has gone through the same struggles as me.

I will mention to my GI doc about prednisone and possible inflammation causing the pains. I already spoke to him before this wash-out period about them (after hearing about it from you) but he said that would be more short term before and after an infusion of Remi. Do you remember what doses you were on and over what period of time??

I'm sure my system didn't like Remicade. Almost immediately after being on it I began having a higher pulse rate like my body was just working harder to handle it.

I'm basically with you on wanting a clean slate before I begin another biologic drug... but I don't know that that will happen. I'm teetering back and forth between 6mp and Humira. I would choose 6mp to give my pains a chance to go away before starting another biologic that could cause the same pains. That way I would have a better idea from one to another what was going on with each. With Humira there is a chance that I could have the same pains. But, there is also a chance I respond very favorably to Humira and that the pains were from the mouse-protein part of Remicade. ---Obviously it's a challenging decision. I have another thread going here trying to distinguish which med to take and everybody has their own opinion. My GI doctor right now says the pains aren't from Remicade but that I can begin Humira anytime. If he really didn't think they were from Remi you'd think he'd want me back on it, but maybe he is respecting my thoughts about it causing the pains.

The neurology option is a good potential lead to try to determine the cause of the pains. The pains from repetition of motion were joint pains... awful joint pains. Otherwise in general my body just aches all over and I feel poisoned. Thankfully I am basically normal with pain meds in me. I just am seeing their effects wear off sooner and sooner and know I need to do something.

As far as your going med-free... how bad were you before going on Remicade?? I almost always was able to go to work and such, but then flared so bad I was house-bound for a few weeks. I could handle things if I got somewhat sick, but what I'm concerned with is going med-free and flaring so bad that I cannot leave the house. That seems like a real risk unfortunately. Right now I'm 5.5 weeks past due for an infusion of Remicade and am doing pretty well. I have a dull burn in my left colon which is always there without Remi, but otherwise I'm holding up.

I have to spend some time with my wife here so I will wrap this up for now even if the thoughts are not complete. I'm on stand-by until next Monday and then I'll get calling some doctors about things. Thank you so much for the time you have put in on this site and in response to me. I hope you're having a great holiday weekend!

Hi Thoreau, Want to get to you before Monday, as it sounds like you are eager to act.

You asked a few questions - so I'll answer those first: My remi loading doses were normal and I did regular dosing at 8-week intervals. Didn't do solumedrol with it, altho I know some drs prescribe it. I didn't do a concurrent immunosuppressant either - which the research shows will delay the onset of antibodies - because I can't tolerate 6MP. (It made me very sick.) I had higher pulse too, but I didn't connect the two. Each infusion was otherwise unremarkable - just fatigue for a few days after. It wasn't until about 3 to 4 months on it that I started to notice what I attributed to arthritis or getting older(!), joint stiffness and muscle pain. But then at 5 months after that infusion, the pains took over my whole body and were excruciating. It hurt to move. It hurt to just lie there. Life came to a grinding halt. The rest of my story about it, trying to diagnose is here. But to summarize: many people had hypotheses that my pains were due to antibodies against the remi, or remi's mouse protein, or just IBD. Those weren't the case for me. And some people have pain from remi and it just goes away by withdrawing it. Not me. I needed more help. Inflammatory markers were high enough to give the prednisone a try. Also the EMG & neuro testing was an important last step, after lots of lab work).

My condition before remi was the worst flare I ever had and ever imagined possible - & it lasted 9 full months. I had trouble functioning most of the time. I rarely left the house. If I went to work, I wouldn't eat anything until I got home at dinner. All day & night spewing blood & mucous. (sorry for such vivid details) Had to change pads in underwear a lot due to leaking. I was anxious 24/7 - with tenesmus. Truly miserable. Tried several meds before remi. I delayed that decision for months because I was afraid of a heavy-duty biologic. Looking back, I wish I had started remi earlier so I wouldn't have had to flare for so long. I understand the real concern about flaring again, so it's scary to be in this in-between period of no UC med. But I really believe this "clean slate" approach & have to let my system recover and get to a new equilibrium. We each have to make these judgment calls.

I've read your posts carefully. It sounds like what you have is truly systemic. Pain meds aren't addressing the cause, so they only "treat" your symptoms. I think going to a knowledgeable neurologist and rheumatologist would be good next steps. Your GI in particular isn't helpful - that's an understatement! - since he dismisses that remi could be causing your pains and he says he has not heard of anti-tnf (or remi) induced pains. I personally think it'd be irresponsible for the GI to prescribe humira or anything else without getting your disabling pains diagnosed. He or you are just guessing, like a shot in the dark. Why would the doctor not support you in first determining what is wrong before adding other variables (new meds)? It doesn't make sense to me. I know the clock is ticking. I am sad to think of you there suffering, and it's affecting your relationships, like it did mine.... One last thing: when I was researching what could cause such pains, many folks with fibro and lupus said it look years to diagnose (for some like 15 yrs!) and they felt really bad psychologically because doctors didn't have answers and some doctors were dismissive. Truly adding insult to injury. It is bad enough to be so sick. To have to struggle to get the proper treatment is just so unfair - and it takes persistence when at times we don't have strength to even deal with being sick. Hats off to you for doing both - and hanging in there. I know what that feels like.
Please keep me/us posted. At this time of thanksgiving, feeling thankful we've connected.