OK It’s Been 6 Days Since 1st Remicade Infusion…hmm

Hi everyone! Hope you are all hanging in there and that today has been a good day for you.

THANKS Adam for posting my story!

So I have been on the Remicade for 6 days now. So the first couple days I felt tired and no other changes. On the 3rd day I woke up and my joints were aching more than usual. I have had joint pain all along with the UC. I was hoping that Remicade would also help with the joint pain but now I am thinking differently. So I went back to work Monday night after a couple weeks on medical leave, thanks to my wonderful co-workers at the hospital who donated over 100 hours of PTO, I was able to get paid while resting at home (I am truly blessed). My UC seemed to be slightly better Monday, but my joints are in serious pain. I took Tylenol and Advil for pain so I could work all night with some relief. By the time I got off work Tuesday morning I was aching everywhere there is a ball in socket joint! I slept well and returned to work Tuesday night at 7PM. My gut feels GOOD!! Only 2 trips to bathroom !!! WooHooo! …….JOINT PAIN out of control though. Have to keep moving, the pain is worse after sitting for more than 20 minutes. Activity always helps. By the time I got home this morning at 8AM and then drove kids to school, got gas, went to grocery, came home did some light house cleaning…I was DONE!! Time for bed. WRONG!!!! Oh no! Here we go again! In and out of bathroom at least 8 times before getting to sleep. Slept 5 hours and woke up to intense joint pain everywhere still, even in joints that don’t normally bother me at all! Ankles, heels, knees, hips (the worst!), wrists, elbows(on fire!), and shoulders.  A walking nightmare, but much better after getting up and moving around. Took some more Advil even though my doctor would not approve I’m sure.

So……I am still optimistic and hopeful that these symptoms will subside, maybe by the 2nd infusion.

Does anyone have any similar reactions to Remicade and joint pain? Would love to get some feedback. My doctor did do a RA test and it was negative, and my CRP is normal. Also, does anyone have any good ideas for joint pain relief? Exercise does continue to help, but then afterwards there is increased pain. LOL I can’t exercise all day! I am going to Zumba tonight (my favorite thing to do no matter how I feel). I just pop a few Advil prior to class and it does the trick. I have tried the Glucosamine/Chondroitin thing through out the years but never any significant relief.  I have also tried Tumeric for a few months with minimal effects. I am also on a large dose of Omega3 (the liquid form) daily.

Oh! FYI Remicade and photo-sensitivity yes in my case. Get burned quicker in the sun!

Take care everyone! :)

12 thoughts on “OK It’s Been 6 Days Since 1st Remicade Infusion…hmm”

  1. Hey Nurse Liz,

    I myself did not really have a flare up of joint pains when I tried Remicade, but like you, I was having some pain even before the remicade in that category.

    BUT, after I tried Humira injections, my joint pains got the point where I could not move at all, and only several vicodin per day were able to allow me to function somewhat normally again. It was really painful indeed. So I know where you are at, and it hurts.

    I can’t believe you can actually work still.. That’s amazing. I really hope the second infusion goes well for you, and on a side note, the Remicade Survey is almost complete and I’ll be announcing the results as a post with everyone’s feedback probably somtime this weekend if I get the chance. So that should be interesting for you to see all the other UC’ers responses.

    Take care,adam

  2. Advil is NOT recommended for patients who have UC. Have you been adivsed to use it? You might check this out. The few times I have used it for headaches it has caused a flare.

    1. I know it’s not recommended to take any NSAIDS with UC. There isn’t much out there in the line of analgesics that are not narcotic in nature to take for joint pain with UC. So I have taken small doses of Advil ONLY WHEN ABSOLUTELY in intolerable pain. 200 mg and have not noticed a difference during or not during a flare up. It does , however usually work wonders for my joints. Tylenol alone doesn’t work as well. I am thinking maybe Tramadol? I haven’t yet taken a prescription med for pain, but someone said that Tramadol might work. Being a nurse, I see all kinds of meds people use for many different ailments. I have taken care of UC patients as well and I always pick their brain about what has worked for them and what has not. It is interesting to see what people are taking and what it does for them.
      So what has worked for you j? Any recommendations?

      Liz :)

  3. I had muscle aches with my infusions too – I am 7 months into Remicade infusions now and they seem to be getting better. As for the bowel movements part – I say relief in stages – it wasn’t until 3 months after starting the remicade infusions (4 infusions) that I started seeing constant results. Good luck – hang in there!

  4. Hi Nurse Liz,
    I was diagnosed with pancolitis, uc through my entire colon 4 years ago. I have been on Remicade for the last 2 years. I also am struggling with joint pain after my remicade infusions. My pain is worse in my hips, knees, ankles, and feet then anywhere else. I do have some pain in my hands, wrists, elbows, and shoulders. As you have found, I also find it less painful if I am on the move. I have taken Tylenol for the pain, but it doesn’t help. I find that the worst pain is at night when I lie down. The infusion I had 3 infusions ago is when I started to have joint pain. What my GI has narrowed it down to is how fast the Remicade was cycled through. I had a new nurse that day and I was in and out of there in 1.5 hours. It normally takes 3 to 3.5 hours to compelete my infusion. After that infusion, I started to have pain in my joints and loose my hair. I have had two infusions since then. My last infusion, I started to have joint pain in my legs during the infusion. My nurse slowed the cycle speed down and the pain stopped. My GI has ordered the cycle to run slower to see if that helps. Currently I am suffering from a skin infection that has been under treatment for a week and a half. I called my GI today and have an appointment with a dermatologist later today and my infusions have been cancelled until this skin thing is completely cleared up. Isn’t UC fun? Oh, just a side note: stay away from the Advil, I know it helps with the pain, but anti-inflammatories will make your UC flare. If that happens what’s the point of the pain from the Remicade, right? Good luck with your joints, let us know if you find something that works. :)


    Kelly D

    1. Kelly,
      Thanks for writing. It has been a full week now and some of the joint pain has subsided just in last 48 hours. I am constantly on the move, which I have found helps as well. Mine is worse at night too. No muscle pain just joint pain worse in hips too. Wake up in middle of the night to switch positions. I have taken advil during and not during flares with no added problems. I take a minimum amount. 200 mg only with tylenol and it does do the trick most of the time. I have never taken more than 400mg in 24 hours. What kind of skin problem do you have? I have noticed that I have a few red dots on arm and chest that itch a little.

  5. Nurse Liz,

    Blessedly I have not experienced joint pain. I am a 60 woman who has had mild to moderate UC for 40 years. Unfortunately, I did experience a really bad flare 10 years ago, and 1 year ago. I recently started having flare symptoms and am on 40mg Pred and continue with my usual dogage of Asacol. I wanted to hit it hard before I got as sick as I was last year. I follow the SCD diet and ….horrors…I smoke 2-3 cigarettes a day. I don’t like smoking but thought that the last flare subsided because I tried smoking. I will have to re-think that protocol.

    For what it is worth, acupuncture has been a tool I have used too. My son swears by it ( yep, he has UC too).

    Wishing you well…

  6. Re: Glucosamine/Chondroitin – I normally take it but was told to stop taking it a week before recent minor surgery. Then I forgot to start taking it again afterwards. I started flaring a week after surgery. I assume the surgery was the trigger since it was in that part of the body, but a few days ago I remembered about the Glucosamine/Chondroitin and started taking it again. My flare so far seems to be improving, which may or may not be connected. (I’m also eating almost no solid food, which definitely helps, though it’s tough to maintain.) Anyway, I googled and found there’s some evidence that Glucosamine/Chondroitin may help colitis, but it’s sketchy evidence. Flare improvements/setbacks always seem to be “could be this; could be that…” but if you’ve taken it before without it at least making things worse, might be worth a go…

  7. hi nurse liz– I take remicaide FOR the joint pain (enteropathic spondylitis) and the second infusion helped more than the first etc and after 3 or 4 got really great relief from it, so dont stop. Would inquire as to the dosage stength (they do vary) and the infusion rate. I found exercise makes it worse–but do extra walking (but i’m old)–look at the SCD diet, i just stopped wheat and dairy and really helped—hang in there!

  8. Hi Liz,
    I was diagnosed with Crohn’s disease 3 weeks ago now. I immediately went on remicade, within a week I was crippled in pain in my hips. Yet again I couldn’t sit down, being up and walking around helped. Having then had an MRI, I was diagnosed with arthritis. I’m 24 yrs old! I have now got to the stage where putting weight on my hips causes pain. Furthermore it has spread to my knees. My doctor is talking about taking me off remicade and moving me to humera. This does scare me as I am working through the drugs too quick for my age and the fact that I will need to come off them at some point should I wish to have children. For me this is just a torturous waiting game to find out if there is anything they can do about this pain.
    Please keep us updated with your progress. I find it interesting as it is all very new to me.

  9. Don’t worry about going through the available drugs too quickly. There are several coming and there are always new ones in the pipeline. Just find something that helps! Humira did nothing for my Chrohns and I just had my 3rd Remicade infusion yesterday. Partway through the treatment, my upper thighs and backside started to hurt and they still hurt a lot! I used Voltaren rub in order to sleep last night. It seemed to help. I sure hope these pains go away. I’m not sure they’re worth it.

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