Severe joint pain; stopped remicade; so sad

Okay, I'm through your response now!

Wow, I really couldn't ask for much more in the way of help from someone else. You are really being supportive and understanding. Please don't feel obligated (because I know how burdens can be stressing!) to help continually, but any response is very much appreciated. Hopefully I'm concluding the hardest part of things and opening myself up to options that I can responsibly handle.

I like the neurologist idea enough to try getting in touch with one this week. Perhaps I should push that avenue over the next week and then evaluate which option to pursue as I know how long things will take with that.

I'm not sure what impression I give off with these posts, but I truly am hanging in there okay. I take pain medicines and then get going once they've kicked in. I use heat to help deal with pains while the pain meds kick in in the morning. During the day I maintain a schedule of the meds so I do not end up hurting too badly. I have tried delaying the meds and I do end up hurting most of the time... so I don't do that much except to see if things have changed occasionally. I guess I've had so much experience with UC issues that it's not much of a change to deal with some sort of issue, haha.

I will keep this post up to date. I think documenting these online is important for others to find through searches if they are trying to find answers that no doctor is giving them.

Thanks again! :)

Hahaha. Okay, thank you for that info!

I have joint and muscle pain chronically, but mine started years before my UC was even diagnosed. I think it's another manifestation of my immune system trying to assassinate me, but it surely isn't due to Remi.

Lonie, it's nice to see you. Have you had an ANA done? Remi has caused a lupus in some people, but it usually goes away after the Remi is stopped. Hope you all find answers to your questions.

Quick update:

Colonoscopy results show I'm in remission. Photos show a beautiful colon that looks healthy, says the GI. I never thought I'd see a colon as beautiful but I sure do now! The biopsies (at various intervals) show "no abnormality" in the colon. Remicade did it, and fortunately it's still holding six months later after last remi infusion. Given so many struggles in managing this disease, I thought it'd be good to take a moment to celebrate and give thanks for a positive point in time.

Contentprof said...
Quick update:

Colonoscopy results show I'm in remission. Photos show a beautiful colon that looks healthy, says the GI. I never thought I'd see a colon as beautiful but I sure do now! The biopsies (at various intervals) show "no abnormality" in the colon. Remicade did it, and fortunately it's still holding six months later after last remi infusion. Given so many struggles in managing this disease, I thought it'd be good to take a moment to celebrate and give thanks for a positive point in time.

A-W-E-S-O-M-E!!!!!

It is extremely good to hear of both of you doing well after stopping Remicade! I know it's such a risk, but if the risk is deemed necessary it is certainly nice to hear some hopeful experiences!

Thank you, and congrats on keeping healthy!

Contentprof

Thanks for keeping us updated on your progress post remicade.  6 mos with no flare is wonderful.  I am now temporarily off remi (skipped the Dec 5 dose) to see how things progresss and off 6mp due to the increasingly elevated liver enzymes and positive autoimmune hepatitis markers.  It was the rhematologist who suggested the skip in remi and a hepatologist who ordered me to cut back, and then off 6mp.  They are both mature experienced doctors who I greatly respect. 

I don't know if you saw the earlier posts about how studies showed you could go back on the biologics like remicade, if necessary, and it will work.  Based on that, and your experience, I am pretty sure I will not go back to the remicade or entyvio or anything, unless and until I have a flare.    I want to give it as much time as possible to see if the pain goes away, and give my liver time to hopefully heal. 

I have found the posts of you and Thoreau and those of several others regarding remi, pain, 6mp and a few other topics to be especially helpful to me in my journey through this terrible disease, the medication side effects, the bewildering medical profession.  I think I now have a game plan for the future.

Thank you, Contentprof.

My nurse from my GI's office called today, which was nice. They hadn't forgotten about me, which I thought perhaps they had. My GI doctor wants to see how I do over the next month medicine free... I think both regarding the pains AND colitis.

I'm forming an opinion intuitively that whatever I have going on is just going to take time to recede from it's stranglehold on my body. Perhaps it will take another 6-8 months. That's okay, I'll be patient. Then I will choose appropriate action from there, regarding UC meds. I am certain I do not want another biologic until then at least. Taking 6mp or an equivalent is something I will consider if another 2-3 months goes by, or if UC symptoms return in any moderate or major way.

I will certainly keep this post updated with any information I learn. I've made a lot of smaller off-shoots before and after this post you created, but I think this is the most thorough thread on the subject. I hope that if others are unfortunate enough to experience the same things we've gone through, that at least they'll be able to search on the web and find this thread so they have some sort of guidance or answers.

Best of luck to you as you continue on with your treatment plans.

Hey Contentprof....Glad your in remission, it sounds like you have had quite a difficult time of it..stay strong and positive, and lets hope 2015 is a good one for us all!

Hey Content. I'm up letting a fever run its course tonight. I was in to two different doctors this week and ended up with something shooting my temp up to 102 or so.

I am frustrated that nobody is even wanting to test for anything else at the moment, but I have to put my faith in these physicians. I will not give up, but it's my hope that if my PCP still sees me suffering in a month or two that she will see the seriousness, and begin to push for more answers.

I'm not sure if I mentioned this, but about five months after the pains began they stopped completely for a month and change. I felt immaculate... like probably the best ever. I had been getting over EBV virus from November into December 2012. January came around and I felt super. I was so so glad. Then February rolled around, my wife came down with EBV, I had a Remicade infusion... and by mid-February I was back with the pains.

The infectious disease doctor ruled out EBV spring 2013. If this isn't Remicade, then I'd say there's a smidge of a chance it's something to do with that. I wish I knew...

Hey Content,

I was out of town until late last night, so I didn't get to the forum hardly at all. I'm sorry to hear you've been ill; has that gotten better in the last few days?? As for the fear of flaring, it's obviously on everyone's minds, especially in our situation where we are med free. I'd encourage you to accept the risk rather than stress about it, as the stress could actually create a self-fulfilling prophecy.

-----
Anyways...

EBV actually stays in the system forever in everyone it infects. It's estimated that if you look at the general population by the time they turn 30-40 (can't remember exactly) that 95% of people are infected.

I am still dealing with pains. I vacationed in warm weather on the beach and felt very good relatively. I still needed pain pills, but as long as I got plenty of sleep I felt pretty darn good. The heat really makes me feel good. Now I'm back to negative temperatures with snow and wind! :(

I am going to give my new PCP's recommendations a good amount of time to work in the next 2-3 months. I will also get in to see the pain management specialist; he must be good if there is a three month wait to see him! Then I will finally pack up and go to Mayo if I don't have answers.

Have a great Sunday!

Haha... I was temped to stay! It probably gets lonely if you don't have family around, but MAN WAS IT NICE! So warm!

Working2Bhealthy, so glad you are finding our log useful. I'm glad you found us, even just for affirmation of the struggle. Sounds like we have had some similar symptoms.... Yup, lots of time researching this over the past several months, because no one else would help. (Like Gary said in a post recently - we have to be proactive...). I went right to the sources of medical journals that documented cases as well as meta-data, and there were plenty of articles about a wide range of adverse effects as well as protocols for doctors to follow in diagnostic tests. So I became my own advocate.

The lupus-like symptoms (that's what the docs call them) have been by far the most painful of anything in my life - and I've had a bunch of stuff. Doctors think of it as aches & pains but it is SO much more than that. Life came to a grinding halt! The pains were searing, truly debilitating, excruciating at times. And I couldn't function - couldn't hold anything, turn a doorknob and push or pull to open a door, write with a pen, type, hold a cup or glass or silverware, or even flush the toilet (which is a real problem for us UCers - thankfully I wasn't flaring when this was at its worst!). Thoreau got good pain meds but I didn't go that route. I went right to prednisone, betting on the underlying inflammatory nature of the problems. Lupus manifests differently across individiuals, as you've probably read. It can take years to diagnose. What I learned is that there's drug induced lupus for lots of drugs, but the anti-TNF induced lupus usually is a lot worse in how it manifests and it takes longer for recovery. Inflammation is often foundational. That's why they call these paradoxical adverse effects (because the anti-TNFs are supposed to reduce inflammation. So imagine the poor folks with RA who are taking remicade to help their joints and then develop lupus and they can barely move....)

You asked about the sensory. The nerve and muscle damage persists for me, and it may go away in time or not. (The docs don't promise, and the published material on this says the same thing - it's uncertain.) For some individuals it's a quick episode, while for others it endures (more like a year or forever). The ones who have quick recovery seem to have just developed antibodies to remicade, as opposed to the other more systemic adverse effects like lupus. For me, there are a bunch of things going on, and this is consistent with many cases that have been documented in the journals. There's numbness and tingling in my hands/fingers, and feet/toes. Circulation is very poor too. Sometimes at night, I stand in the tub and run hot water over my feet to try to warm them up before bed, but i have to be careful not to burn them. How it can be both numb and painful is puzzling to me. So that's sensory stuff that remicade either caused or triggered (like turning on a light switch on what may have been an underlying condition or predisposition).

Muscle functioning has to be checked out as well. I have persistent weakness as well as slow conduction. The muscles just don't respond like they used to. For decades, I lifted weights, did a lot of aerobic exercise. Now none of that is possible. I'm just too weak and the muscles aren't responding to my efforts to regain strength. I have lost about 30 pounds in the process, but it's not a healthy weight loss. It's very humbling. The whole process has left me very grateful for all the positives in my life. And I don't take anything for granted.

So if you think you have some other things going on, it's definitely worth checking out. The truth is that anti-TNF medications have been implicated in lots of adverse effects (even MS), and it's possible that you have an additional something that should be treated. Usually the lab work, especially postiive ANA, anti-dsdna and p-anca tests will point the docs in those directions to do further tests, which could lead them to do a EMG and nerve conduction study (uncomfortable but worth doing if they think it's appropriate) and MRIs of the head, neck, spine, etc. if you are worried. Please don't suffer longer than you have to. I know I did. And it was really hard to advocate for myself when I was in such bad shape. But no one else will. We have to dig deep and persist with them until we get the help we need.

Please let us know what happens next for you. I'm glad you have at least one doctor who cares about your whole well-being and is taking you seriously. Sending support your way!

I can't afford a long winded post here, but wanted to update:

-I have hurt like hell this week.
-This morning I couldn't move for a few hours. My wife said I looked on my way to death.
-So, I went to see the new GP again.
-The GP said that I should take an antidepressant to help with the pain AND anxiety.
-The anxiety thing infuriates me. I think that when I go in after 30 months of severe mystery pain I am allowed to act frustrated without them needing to drug me up again. I'm mystified why I would be classified as needing a drug for the way I am. I openly asked my wife if she thinks I'm anxious, and she said no more than anybody would be in my situation, and that it doesn't justify any drug.
-I started seeing my counselor again last week to just make sure all is well with me given the tremendous amount of varied stresses that came at me in the past year and a half (friend dying, dog dying, dad's health failing, having to sell business with dad, having to take full responsibility of the sale and help dad along, getting married, dealing with pains every day of it).

I did however get the GP to run labwork. Finally someone is going to run an ANA. I asked if we should do a CBC and she said no since the GI docs are doing them regular... to which I wondered where that misinformation came from. I haven't had any since stopping Remicade. She has the ANA set up to trigger deeper tests automatically if the results come back high.

I'm about spent with all of this bs. I have a hard time getting to sleep because the tramadol keeps me up... but soon I'll be asleep and in the morning I will be dead meat again for a good portion of the time 'til noon.

Why all of this must be an uphill battle is very confusing to me, but I do well when challenged. I just hunker down, retreat to regather myself, and then hammer back at things until I get what I was shooting for.