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Remicade - terrible joint pain

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Posted 8/5/2014 2:31 AM (GMT 0)
It started last week, I had weird joint pain in my forearm going towards my wrist. Then it started in my hips, my knees, my legs. It got to the point where last Thursday I was unable to move my right leg and would wake up throughout the night just from the pain. By now the pain was also in my fingers, my feet, my neck, my back. I went to the ER and checked myself in, telling them about my symptoms, and telling them I feared it was a side effect of the Remicade I have been on for a little over a year. They did blood tests. They found nothing wrong, and the doctor told me I need to see my gastroenterologist. They gave me dilludil (sp?) and another anti-inflammatory and sent me home.
Since then my right leg is able to bend without as much pain, but there hasn't been any improvements otherwise. I'm limping everywhere I go. It hurts so much I want to cry but I feel like nobody believes me. I tried to call the hospital my gastro is at today to make an appointment but there was no answer. I don't know what to do, I'm lost and scared and in pain and because there's no "proof" of what I have I feel like my boss thinks I'm faking. Basic arm movements hurt, I'm a receptionist at work and just reaching over to answer the phone hurts.
I guess I'm wondering if anyone else has experienced this. I've been on Remicade for a year without problems (it was a life saver - it was Remicade or surgery) so I'm terrified they'll take me off of it and I'll have to go through surgery but I can't imagine living my life in this kind of pain forever. I'm 25 and I feel like an 80 year old patient with severe arthritis.
Sorry for the long post - I don't have anywhere else to turn right now. Thanks for reading and I'd appreciate any advice.
-Aliseayah
Posted 8/6/2014 1:26 AM (GMT 0)
Sorry you're having so much pain. I was on Humira for over 6 months when I developed severe muscle pains - started in my knees, then moved to upper arms, wrists, fingers. It would get worse throughout the day and putting on a jacket, brushing my teeth etc. was really painful. Luckily, it wasn't constant, just when I moved, but it was hard to sleep, cuz I couldn't even roll over in bed. I had a lot of fatigue, too. My PCP did blood tests for ANA (positive at 1:640) and various antibodies (SSB-La was positive). I was sent to a rheumatologist, who diagnosed me with drug-induced lupus and took me off the Humira.

I suggest you ask your PCP or GI for an ANA test. Maybe you'll be lucky and it's not the Remicade, but they told me the Humira was affecting my kidneys and if I kept taking it, it could kill me, so you don't want to take any chances. I understand how scary it is to have to stop a med that's working and feel you're running out of options (I'm flaring now while waiting for 6MP to start working). If you get drug-induced lupus from one anti-TNF, they don't like to give you any of the other anti-TNFs, but the new biologic just approved, Entyvio/Vedolizumab is not in the same class, so may be a good option for you if you had to stop the Remicade.

UC gives some of us joint pain as an extra-intestinal manifestation of the disease, but your pain sounds more severe than that - maybe someone else here has more experience with this.

You don't mention if you are on any other meds - the only other time I had excruciating joint/muscle pain was when my GI tapered me quickly off of Prednisone.

If it is the Remicade, the pain should go away as the drug gets out of your system. My rheumy gave me a low dose of Prednisone, and the pain was virtually gone in a day or two.

Hope you feel better...
Posted 8/6/2014 1:12 PM (GMT 0)
Hi,
Thanks for your response! When I went to the hospital on Friday they did blood tests and tested for a bunch of things, including Lupus and it came back negative. I went to a different hospital than the one my GI is at so he told me I should see my own doctor soon, but he prescribed me some pain killers - basically Tylenol back pain and "Oxycodone" both of which I don't find help at all. I managed to get in touch with my GI's office yesterday and they gave me an emergency appointment for first thing Friday morning.
I'm not currently on any other meds for UC, since the Remicade has been working so well I didn't need to take anything else.
I've had joint/muscle pain from being off of prednisone as well but no where near as intense as this.
I tried something this morning inspired off of something I read on one of these threads: set my alarm for an hour before I need to get up for work and took 2 extra strength Tylenol then back to sleep. I'm also gonna mention I've been sleeping in my recliner as I find it took painful to sleep in my bed where I instinctively roll over and wake up from the pain. The pain killer method worked somewhat, it wasn't as excruciating to get up and I was able to walk to work (I don't live far but I'd been forced to take the bus) so that was an improvement. I just hate the thought of having to rely on Tylenol for the rest of my life...
Posted 8/6/2014 1:18 PM (GMT 0)
Do you get pre med before your infusion? If not, definitely ask your doc for it. I get Solumedrol and Benedryl before my infusion because just like you, I had severe joint pain but mine happened after my 3rd infusion, my hands also swelled up. When that happened I also went to the ER where they gave me a shot of Toradol and a script for prednisone.
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