Severe joint pain; stopped remicade; so sad

Quick update: (Scans Received)

Most everything looks normal. Appendix looks slightly swollen, but no pus collection. Also something noticed with adrenal gland, but GP doesn't think it's anything (but will talk with endocrinologist).

Have to see if IBD could cause appendix to swell; don't know.

Hey T, I was wondering how you are doing. Glad the prednisone is behind you but sorry Lyrica isn't helping. Is Cymbalta similar?

I started to flare and then managed it with cortenemas. Whew! Still flying without a net of UC meds, as I get through what I hope is the final stage of my nearly year-long recovery from remicade. The lupus labs are not yet normal, but I'm hoping they will be at the end of May. I have a hunch the neuropathy is here to stay but the really bad joint pain is nearly all gone (aside from arthritis which is chronic).

I do wish you had some relief from it all.

Mrs. Brady: Have not heard from you for awhile and was wondering how you are doing and what you have decided to do.

I am now 6 months off remicade and on 30 mg prednisone which is not working too well. The last flex sig (after 4 months off remicade) showed severe inflammation. The one month of vancomycin seemed to do something, but not enough. Will be starting entyvio as soon as I get insurance approval.

At least the severe DILE (remicade) pain has largely (not totally)subsided. Still have a lot of weakness in legs and at times severe pain in lower back and pelvic area (more due to UC inflammation in my opinion). Also have a lot of edema due to (vancomycin, prednisone or UC?) which makes things very miserable.

Still love the new doc. They actually call you back within hours, and listen to what you say and are responsive. How wonderful. Should have left that other health care system years ago.

So, while things are not all that great, at least I have some hope, and that makes all the difference in the world.

Hope you are doing better and have some hope too.

I was on my 6th Remicade treatment and about 36 hours after I was a bit tired and took an hour nap. Woke up with pain in my middle finger 2nd joint. 10 minutes later my wrist ached, 15 minutes later my hip started to hurt, then my other hand and so on. I went to emergency where they studied me with great fear as they were concerned I was experiencing anaphylaxis. Anyway a treatment of Tylenol and Motrin and the symptoms quieted down. 24 hours later I was a bit better. Dr. took my off Remicade and now off to another Dr. to see about Entyvio. I really hope your pain starts to subside. Dr. in emergency stated that arthritis is something that I may want to prepare for as UC and joint pain go together.

Hi Jay,
So sorry to hear of your pain. My pains moved around and I had some joint swelling.
Like Thoreau, the pains overtook me at 6 months into remicade, but looking back I can see there were signs earlier (similar to what you describe). One of my GI second opinions said he saw some patients on remicade with pains who would have them subside right after an infusion and then re-emerge after a week or two. (Didn't correlate with remicade antibody formation btw).
I think a good rheumatologist could help you figure out if you are having paradoxical adverse effects of remicade (like I did). Paradoxical in that I got bad auto immune inflammatory pains that needed the dreaded prednisone to help me get back to normal (all except for persistence of peripheral neuropathy). Pred didn't help Thoreau. As you can tell from this thread, our GIs tend to be uninformed about this and may be dismissive or say it's just extra-intestinal manifestations of UC. For me, it was definitely caused by remicade. I'm approaching the one year mark since my last infusion. Literature reporting these effects say it may all get better in time once anti-TNFs are stopped, but no guarantees.
Let us know how you do.

HappyDay-- I too am suspicious that Remicade is causing cellulits. I have never had cellulitis before and I have now had it 4 times since starting Remi. Since you have been off Remi, have you had anymore cellulitis episodes?

Update: Copies of all medical records are now with a rheumatologist at Mayo to look over and decide how to proceed. GP's relative works with this doctor and recommended them. I hope we find some things out.

Hey T - So sorry you are still hurting & at the max tramadol dose. Sounds like you are getting closer to Mayo. Got a date?

The EMG test may or may not come with a nerve conduction study. So ask for that. It'll help them figure out if your pain emanates from nerves as opposed to muscles. For nerve conduction study tell them which side has more pain - they usually pick one side. I asked them to do both because I had such poor circulation and they had trouble getting any readings. Had to warm my limbs under a heat lamp to get results.

As for muscle biopsy, that can be hit or miss diagnostically depending on where they draw it from.

The EMG is pretty uncomfortable. But the nerve conduction study is just buzzing, so not too bad. All well worth it to help narrow your diagnosis.

Hey T -
How about MRI or CT of head/spine?
Glad meds are making pain tolerable.
When is Mayo trip?

Hey -- just updating this a little -- still waiting until next month to go to Mayo.

The Pains -- still persisting, causing aches, myalgias, a heavy feeling that I need rest. Also still get shooting pains in what feels like bones, mainly in arms. And, I get joint pains with heavy repeated use, mainly in elbows at present. --Pain meds help alleviate most of this for 4-5 hours of their 6 hour cycle. Sometimes they help all the way through.

I've recently been tested for toxins/heavy metals -- and everything came out fine for that as well. I had shown on one lab a couple months ago a giant platelet issue, but we retested and it didn't appear to be a consistent or significant issue. Overall I essentially appear to be very healthy.

Been off Remicade completely since November 2014. My last infusion was late August 2014 (or very early Sep...). If pressed with the question if I'm better/worse, I'd loosely guess I'm a bit better. I still have a serious problem, but I haven't had any days lately where I wake up hurting so bad I can't lean over and take my meds... which was an issue early this year. I am not sure if this is indicative of improvement, or of better management.

I take Tramadol/Tylenol/Lomotil (Lomotil for gut IBS, but adds element of pain killing when added to this combo). I take Tramadol at 4 a.m., 10 a.m., and 4 p.m.. I take the tylenol and lomotil with those doses, but try to skip a tablet of tylenol here and there to not overload my liver. At 10 p.m. I take Tylenol PM, and do not take lomotil or tramadol. I do not take tramadol because 1) It acts as a stimulant and keeps me wide awake, and 2) a pain management specialist warned me of the risk of serotonin syndrome if I took any more than 300 mg tramadol per day, and presently each dose I take is 100 mg. --I find that if I do not take the tylenol pm (sometimes take just tylenol) in the evening (10 p.m. usually), I hurt way worse at 4 a.m. when I wake up to take meds (and then go back to sleep while they kick in).

UC-wise, I am gluten-free and holding remission. I have tried a small amount of gluten three times in the past month and a half to test my body's reaction -- and all three times within the next day I had very bad pains in the area of my abdomen that was always the worst to hurt when I had a flare of UC (left side of colon). I still experience IBS issues somewhat... such as if I'm going out on a walk where there are no bathrooms I make very sure I'm emptied out enough first. I feel that the gluten-free diet may not be the cause of my gut issues overall -- but it has acted as such a big contributor that without eating it, I'm able to help myself control things much better. -- I have been supplementing with turmeric root powder (1 tsp in water, empty stomach), and l-glutamine powder (1 tsp, empty stomach) -- take both at same time. Then I take nexabiotic probiot 20 minutes after I take those. I began taking these after seeing mucus one day -- which I blame on eating a lot of vegetables and some other trigger. Was able to get myself controlled very fast with these supplements.

My life -- my wife and I sold our home and live in an apartment, which has been a very nice stress relief. I have wrapped up responsibilities from selling the company my dad and I ran, and am mostly caught up with my rental properties. I spend my days putting together plans for my next endeavor now. Life isn't perfect, but the relief of all the big stresses has been nice.

I have a big collection of medical records now, that I need to get in a very clear organized system for Mayo. I'm praying that it will be a simple trip, where they will say that Remicade did cause the issue, and that it will go away with time.

Posting all of this information in case anyone can benefit at any point in the future as they read. I will be on to post things after Mayo... as I hope that is the turning point in this trial in my life.

Content -- thanks for checking in, it's good to hear from you. I was glad to read that your health sounds relatively stable, enough to really be thankful for. I was a bit surprised to hear you say you don't regret Remicade, but then I thought about my last severe flare, and immediately understood. Let us hope you are able to maintain things well going forward.

So... I did go to Mayo earlier this month. I received your post on here last week, but was too mentally exhausted to reply. Mayo was the last stop I had in line, and I was ready to completely let all of that world go, if only for a bit.

Did I receive an answer to what my pains are from? Yes.

I initially saw rheumatology, and was extremely pleased with the physician I saw. I had organized and prepared a 2" binder full of medical records, sorted by physician. I had a complete spreadsheet created of all my tests and results over the past five years, by doctor. I had a symptoms journal, and an overall symptom description... complete with a diagram of a body with the areas I feel the pain indicated. What resulted was a very clear and effective communication between the doctor and I.

Within 45 minutes into the appointment the doctor said that he thinks that the Remicade triggered this pain issue in me. The key word is "triggered", because now he thinks that my brain has been changed, to where it is perceiving pains that are not actually there. We can't know for sure if it was the Remicade, but it lines up very well, he asserts (emphatically) that he DOES see patients get the same pain issues when treated with Remicade.

There are a couple very important and interesting notes here:

-Why did prednisone help at 40 mg?
His answer: Prednisone can release endorphins in the brain, and that is very likely what happened in my situation. It wasn't an anti-inflammatory situation, it was a PAIN-KILLING situation. This makes sense, because my SED Rates have been either marginally above normal (17-22 where 15 is normal) and down to 12 recently -- which indicates I was not very inflamed.

-I have a degree of hypermobility:
I can put my legs behind my head without touching them when sitting. I can take an arm and nearly lay it along my shoulders and neck where it looks broken. Why is this important? The doctor said that there is a correlation between hypermobility and pain. It is not 100%; he said: "It's like smoking, not everyone that smokes gets lung cancer, and not everyone with lung cancer smokes. BUT, around 50% of people with hypermobility have pain issues." So, it sounds like my body is a susceptible candidate to get pain in general.

-We also addressed Epstein-Barr Concerns:
When preparing for Mayo I reviewed all collected records, and found one EBV test that showed a replicating viral infection (EBV PCR) where the DNA was replicating in fall 2013. This should have been caught and I should have been scanned to rule out lymphomas since I was on Remicade, but it was overlooked by infectious disease. Whoops! >:-( Anyways, there were several other EBV titers done in fall 2012 and 2013 that showed "equivocal" levels of IgM (indicates active infection), and one positive. This was certainly another concern. HOWEVER -- we had all of these labs repeated at Mayo, and they came back clean. It was likely a much unneeded variable, but not the ultimate cause.

What does all of this mean?
-I will likely feel better with time... the brain should slowly change back.

I ended up only seeing rheumatology while at Mayo. The rheumatologist recommended I see Infectious Disease, in what sounded more like a precaution. However, they were difficult to get into. I had labs done, and after some basic EBV titers were done I felt comfortable enough to head home. Mayo offers an "E-Consult" option where a doctor will look over my records and labs, and give their opinion. The following is the summary of that:

Infectious Disease E-Consult
-I have had low level EBV reactivation (when I was on Remicade).
-Rheumatology doesn't think that is what caused the pains -- and ID tends to agree.
-A low level EBV situation can be due to lower levels of cellular immunity -- such as with transplant patients.
-I have low levels of cellular immunity -- but "not quite to the level of someone who has had a solid organ transplant."
-My CT scans showed no signs of issues with lymph nodes or such.
-No further imaging or evaluation for EBV issues was thought necessary.

Where I'm At Now:
-I have a phone consult with Mayo's pain management late this month.
-I'm taking a little sabbatical from thinking about all of this too intensely.

I do wonder why my immunity is low; I actually just saw that today (finally found the e-consult full record). Will worry about that later.

Essentially -- I think over time I will keep feeling better. I'll talk to my GP, immunology and pain management some as time goes on here.

The good note: My wife and I think I'm at least 10% (she thinks more) better than I was this winter regarding the pains. I can sit up while in pain, and use the heating pad less.

Thanks for listening. I seriously hope all of this helps someone.

Hey T - Glad to hear your comprehensive report from Mayo with answers about your pains. It's complicated, and you did an A+ job giving them data on your condition. I imagine you are exhausted from it all. Some decline in pain sounds good. Wish it were more relief for you faster though...

I'm so sorry about your father. I have several friends who have for years managed Parkinson's. It's varied in its course for everyone. Some did ok w/the medications for many years. I hope so for him.

As for stress, I am right with you. I'm very sorry to report that I've started a flare over the past few days. Mucus first & now blood & cramping. I guess Remicade could only take me so far. Last dose I had was May of 2014. Since then been recovering from the lupus it caused. More stess now in my life is I think what triggered this or maybe it was just a matter of time. (Gary would say that I think.)

Doing Cortenemas and really hoping that may nip it in the bud. I have a hunch I'm in for a bad flare though and may need to turn to entyvio. Very worried and reluctant to go down that path, since I have had allergic reactions to many drugs (mesalamines, 6mp, anti-TNFs are among those that created severe adverse effects). Eating broth and liquids for a while to see if that helps.

Feeling stuck and scared. Please send good thoughts!

Hi T, the terrible pains I got from 6mp finally subsided after 4 months off it for me. I too am subscribing to the theory that my pain receptors were turned up and finally turned down.

Interesting that you are hypermobile. You don't have Ehlers Danlos do you? That can cause severe pain and bowel issues too.

I just had an interesting result back from uBiome. Some 15% of my sample was from one family of proteobacteria (mostly the bad guys in our bowels), that's way higher than it should be. I read that when it gets out of control it can cause osteomyelitis. I am wondering if the strong immune suppressing effect was causing this bacteria to give me problems. I'll never know though because no doctor here is interested in looking into anything that deeply.

I'm flaring now again that 6mp fully out of my system. Biologics will prob be next for me. I am praying I don't get the same horrendous pain issue again.

Wishing you well.