Severe joint pain; stopped remicade; so sad

T, I warmly welcome your advice. I had tossed my supplements from 2 yrs ago - probiotics, l glutamine, turmeric, etc each of which at the time only made me feel worse during that horrendous 9 month flare. Left me drinking chicken broth & losing 30 lbs....
This is the real deal - flaring now - lots of bright red blood so I feel back at square one. Only with fewer options. Want to learn from you.

Also, entyvio is not an anti-tnf but it's still a 'mab' (suffix) which tells me it messes with antibodies & that's what the others did to cause these joint pains & triggered other auto immune disorders like lupus and MS, which is what the Remicade did to me. So how would entyvio not do the same thing potentially? At least for the research on adverse effects of anti-TNF meds, the antibodies got out of whack & resulted in disabling pains, right? That's what the 'mab' mechanism does purposefully to help the colon heal, but the rest of our system may be triggered into dysfunction. That was my takeaway from tons of research articles on adverse effects that I read in 2014. Maybe my memory is fuzzy because I'm freaked out by flaring again...

Thanks for helping in my time of despair. I'll try anything before more drugs.... And yes, very anxious & trying not to be....

Hi Mrs Brady,
So sorry to hear of your ongoing condition.

Yes, I was fortunate that my antibody tests returned to normal, but it took a little more than a full year. Clinically no signs of lupus. However, I was left with some neuropathy; it's manageable and I'm not treating with medication.

The researchers studying the adverse effects of this class of drugs have documented a range of troubling things that may occur for the small population of us who encounter them. It's puzzling for the rheumatologists as they sort out each of our cases. For other folks on the forum who didn't have positive antibody tests for particular identifiable conditions (like lupus), it's challenging as they need to sort through whether pains are extra-intestinal manifestations of UC/IBD and/or other auto-immune disorders that cluster.

It sounds like in your case, with documented ongoing lupus, it could be: a) the drug triggered it (genuine drug-induced, as mine appears to have been) and it may actually resolve with more time; or b) you had the underlying predisposition or the actual condition, and it just became manifest at this time (perhaps the drug may have flipped the switch on, which they've seen with lupus & with MS). Monitoring this at regular intervals is essential to your ongoing health, since complications can occur down the road for each of these conditions if they persist. Our GI docs tend to not know about this, as it's outside their realm. So sticking with a great rheumatologist is wise.

I'm not a scientist, so maybe a HW member can chime in here. I think they are studying our cases carefully because there are implications for our decisions about UC drugs we may consider in the future. For example, all the 'mab' (suffix) drugs seek to alter the antibody mechanisms. Once people like us have had these adverse effects, it raises the question of whether we want to subject ourselves to them again, or wait for advances in UC medications with other targets. Whatever I do next for a UC maintenance drug (looks like I have only one option left), I'm definitely deciding in conjunction with the rheumatologist based on this experience.

I hope your situation improves & your UC remission holds!

Contentprof and Mrs Brady Haven't heard from you in so long. Sorry to hear you are not doing too well.

I think I posted last winter that I started I bad flare, confirmed by a sigmoidoscopy in February, only a few months after I stopped Remicade due to the joint pain.
As an update, I started on entyvio in May under the supervision of a new doctor, whom I love. I have had 4 infusions so far, with absolutely no side effects and no premeds. Well, I was very very tired after the first infusion.

Okay, so just to regroup here even though I'll mention what I already had:

I went to Mayo in August, after having tested for anything any of the eleven doctors I saw could think of. The only things that came back at all were that one time I had some giant platelets, but was retested and shown to be insignificant. I had had EBV infections in 2011, 2012, and 2013. Although suspicious (definitely), the rheumatologist at Mayo confirmed with me that they do see people like me (chronic mystery pain) who have been on Remicade. He sees enough that he was emphatic that the pains could've been triggered by Remicade.

At Mayo they ran some more tests on EBV, both titers and PCR (DNA replication). None showed anything active with EBV. The labs showed I had very low immune cells called eosinophils. However, they weren't "as low as a transplant patient", and the Infectious Disease physician said my case needed no further pursuit on the immune or EBV fronts.

The Mayo rheumatologist essentially said that my brain had been reset, so to speak, to sense pain even when it was not there. It had learned this from a trigger (likely remicade), and something rewired my nerves to be this way.

I spoke to Mayo's pain department (a nurse) on a phone consult a couple weeks ago. She mentioned the words "Hyperalgesia" which is an elevated pain sensation, and also "Central Sensitization". Please see this video she referred me to, by a physician at Mayo in Florida: https://www.youtube.com/watch?v=8defN4iIbho

The short of the story is that having been on Tramadol as long as I have, it alone could be reinforcing this nerve rewiring. The only way to know is to get off of it. I have to taper down one pill per day, each week, until I'm off of it completely. Then, after 2-3 months being Tramadol free, I will know where I stand. Mayo told me 2 months, the local pain physician said 2-3 months. The local one said: "It is not going to be fun, but after it all you should feel better than you do now."

I'm down to four pills (from six). I feel sick, and like I have a fever. I want to lay around a lot, and feel depressed to a degree. I'm definitely "off", but there doesn't appear to be any way around what I have to do. I am still taking Tylenol and lomotil (which I've found can block a certain gate on the pain pathway somewhat... or nerve pathway... it helps).

I do not know how it will turn out overall. I'm just sucking it up and going with it.

I'm 10 months clean of having any Remicade in my system. Am gluten-free, and would have flared if I were not... figured this out last Nov/Dec. Certainly not speculating that it's my fix for sure. I also have turmeric root powder, l-glutamine powder, and nexabiotic probiotic that I take when I sense any sign of gut rumblings.

Hi Thoreau,
So good to see your post! Been thinking about you and hoping your tramadol weaning was proceeding ok with even less & tolerable pains. I posted a query to you here a while back but I figured you were not checking in much.
I wish you had more relief. I'm a big fan of Tylenol which I think is safe - only hard on the liver if used at too high a dosage.
Let us know what your local pain doctor says. Maybe there are more answers we just don't have yet.
Sounds like gluten free is still going well for you along with your lifestyle changes (less stress).
I've been on prednisone since flaring badly in July. Managed to stay out of hospital but it was close - severe weight loss & spiraling down. Your advice really helped a lot when I was running out of hope. So thanks again for your very thoughtful posts. That was the worst flare yet so very scary. I turned it around & got on Entyvio. 3 loading doses done so far. Got to resume eating very plain food. Gained back a little weight. Able to work. Fingers crossed Entyvio will get me into remission. Feels very different from remicade.
Only concern at the moment is that, as I taper Pred, pains are returning. Mostly neuropathy - feet & hands. Feels very neurological (like buzzing electricity & numbness) not like the sharp truly debilitating traveling pains we both have had. Not taking any medication for it. Lupus seems all gone. It has been a year & a half since last remicade dose so that's a relief.
Hoping all is well with your wife (is she still struggling with such fatigue?) and with your dad.
I'm so very glad you re-surfaced.... Keep persevering - this is one long endurance test!

Hey Thoreau, Good to read your update. Sorry to hear you aren't back to your self and things are not calm (yet) despite your best efforts. It has been such a long journey.

At least there's no UC flare. Another poster recently said that they remained flare-free for a year and half after last remicade dose! (For me it was about a year, actually 13 months.) Hoping you get at least that!

I think your pain management dr was probably talking about Norepinephrine, which is a chemical in the brain and also a neurotransmitter. Some antidepressants increase it, just as some increase dopamine (which wellbutrin targets).

Perhaps the dr was referring to Neurontin (Gabapentin)? That may help.
I worry about that much Tylenol, given what it does to the liver. Hoping you get yours checked....

Entyvio - so far so good for me. I'm trying to stay positive & hoping i'm not allergic to it.

Thanks for letting me know this is how to reach you. I think of you quite often and am sending lots of support for your health to improve --especially to stay flare free! -- and all your family responsibilities.

We can get pains at any time as a conplication of UC, sometimes it is unrelated to our meds. www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Yeah try antihistamines and/or steroids leading up to and after the infusion, might help if remicade is the cause. Have you got a remicade antibody test? Infusion reactions and side effects are most pronounced in those who have antibodies...

Bowels are great not sure if it is the Remicade or Imuran.
Life is far better except for poor sleep. (Wrist Pain)
Really don't understand blood work terms and numbers.
I think it is antihistamines they are going to prescribe before the next infusion.
Never want to see another prednisone pill.

Hi Roadtrip, Sorry to hear of your pains and thanks for inquiring for updates. Pains do come with UC. My story was different though so please bear with this update.

We have learned a lot over the past 2 1/2 years since I first posted about this and I was overtaken with excruciating / disabling joint pains - mostly hands & wrists - couldn't write, hold a cup, even lie still. I was in the very, very tiny % of those of us who have adverse reactions to Remicade. I was ultimately diagnosed as having anti-TNF induced lupus. Took about a year to recover with the help of oral prednisone (well aware of the downside of that - but it worked!) along with doing neuro PT to get joints esp wrists & hands functioning again and to regain strength all over from the muscle wasting.

Prior to that unfortunate development at about the 6th month mark into Remicade, it was going great on remi, recovering from the worst flare ever, and it seemed inconceivable to stop it.... As I've said before, if I had known then what would unfold, I'd still do remicade again - so no regrets despite months of misery recovering from adverse effect. Remi extinguished the flare and got me to a new quality of life. In fact, I think it stayed with me for months after stopping the infusions. So it bought me time enough before i was overcome by the next big bad UC flare which flattened me & I couldn't function.

After researching options, I was ready to start Entyvio in October 2015 and I am happy to report I've been doing great on it ever since. UC totally quiet. Only two downsides. It seems that there's more vulnerability to respiratory infections. The other is that the extra intestinal joint pains/problems that accompany UC for many of us are very evident, and I have to mange all that as they emerge (flare-like). It makes sense since Entyvio is gut-specific.

The benefit from having lived through all of this is that I can now distinguish between IBD related joint pains (inc inflammatory arthritis) as distinct from what had occurred on remicade (as excruciating wrist / hand pains telling me it was really wreaking havoc with my system & causing polyneurophathy, so needed to stop). I realize we get to know our bodies better over time. I get pains now in wrists and hands, weird swelling of wrists & hands (inc swollen fingers out of the blue, & my knees - swelling that was so bad I couldn't walk for a bit & needed cortisone injections plus a round of oral Pred to calm it down. I think it's to be expected that we get joint pains with IBD, without the more systemic anti inflammatory effect of Remicade as a maintenance Med.

My very smart rheumatologist was the key guide through all of this unfamiliar terrain, along with an experienced neurologist. Had lots of blood labs, definitively experts diagnosing, rather than my GI, in case you want to get evaluated by others with expertise.

Would be happy to provide further details from lessons learned if it'd be helpful. Wishing you well as you cope with what feels like an unending set of challenges since I've had UC for close to 20 years. (Please forgive that I haven't updated my profile as I've been off line for a while....)

Also, if you can reach Thoreau (he usually responds when there's a post to our lengthy thread), we were on parallel tracks of disabling pains and desperate efforts in sense-making with different manifestations and recovery timelines. It'd be good to know about his recovery post remicade too.

Best wishes that you only have our regular IBD related pains. It's possible that an IV push of solumedrol just before remi infusion could help so may be worth a try.

CONTENTPROF: This thread is old so idk if you'll even see this but what you wrote, "he 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 re-position slightly in bed. Very very scary.... " could've been me last month, lasted a week and yesterday, symptoms started to return. Ive been on remi for prob 10 years and it was a miracle drug for me and now this... i started remi every 8weeks back then, over the years, many years, i could start telling when it was going to wear off because i would start having joint pain, never, ever this bad. motrin would control those joint pains, at the time i thought they were really terrible pains but the remi was controlling my psoriasis so nicely that those pains were something i could deal with. over the years i had to have it increased slowly a week at a time because it would start wearing off faster. I'm currently at 5 weeks and i just got bumped from 6 weeks to 5 weeks in December. well in November, i was diagnosed with hbp and prediabetes so i was started on new meds for those, previously, the only meds i was on was the remi so in January when these other symptoms began, i blamed it on the new meds, i had the doctor switch all of them, coincidentally my remicade appointment was a few days later and once my remi was infused, i was a whole new person but i blamed it on the other drugs.. here i am today, remi is due in a week, symptoms started returning yesterday and in 4 days if i am unable to get out of bed like i was last month, i know that it is the remi... but then what? hmmmm, that pain was excruciating to the point that i wished myself dead. the pain became excruciating - couldn't use my hands or even lift my forearms to reposition slightly in bed. Very very scary.... that was me to a T. My boyfriend and teenage daughter were taking turns picking me up to put me on the toilet and that is unacceptable. So.... I probably wont get my next dose of remi so this doesnt happen again....

Just seeing your post now, as I've been offline for a while.

So sorry to hear of your pains. A small % of us have had this adverse effect on remi, and unfortunately it can take quite a while to determine that's the case. Based on your account, it makes sense to stop remi, so I'm agreeing with Soy.

If you have stopped it, I hope you're feeling better. I needed a lot of prednisone to get rid of the debilitating pains.

For what it's worth, I had several months of remission after stopping the Pred before severely flaring again. It felt odd & risky for that time when I had no maintenance drug. Then with renewed despair due to worst ever flare, I agreed to Entyvio. Been doing great on it (have an upcoming colonoscopy so the dr can see). I premed with solumedrol before each Entyvio infusion to reduce chance of reaction.

At times I get joint pains (often symmetrical) but nothing at all like the intense pains while on remi. So I see these as extra-intestinal manifestations of UC. It's very humbling, & I do my best to ignore them.

Will check back here to see if you're doing better. I sure hope so!

Hi Thoreau. I’d love to hear how you are doing. I read about your “mystery pains” on Remicade and how various docs couldn’t find anything in your blood work such as antibodies. That’s me. It’s a horrible migrating pain that comes and goes....