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)