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Remicade questions -please

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Ulcerative Colitis
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Posted 11/10/2011 3:10 AM (GMT 0)
Hi- my daughter will be having her 4th or 5th infusion this week. This is the 2nd time that her body is aching all over and last time the infusion ended the joint pain.

She never had joint pain before she began remicade, and the Dr says it's from the disease. I know that it can be a complication of the disease but like I said she never had joint pain before remicade. does remicade cause joint pain?

Thanks-
Posted 11/10/2011 3:19 AM (GMT 0)
I have been wondering the same thing, seems like slot of people have that scenario which makes me afraid to go for my fourth, even though I haven,t had any reaction yet. It doesn't seem to be working anyway. Is it working for her?
Posted 11/10/2011 3:53 AM (GMT 0)
Yes! My first infusion wasn't too bad. I had some muscle cramping and headaches but my second one caused me to go to the ER from severe joint pain - they ended up putting me on prednisone for a week and giving me a shot of Toradol. My 3rd infusion, the gave me Iv solumedrol and Benedryl before my infusion and that made a huge difference. I didn't get any joint pain from this last infusion - just minor muscle cramps.

Dr.s are quick to blame everything on Uc. But if your daughter didn't have the joint pain before the Remi than it was the Remi that caused it. Does she premedicate before the infusions?
Posted 11/10/2011 4:17 AM (GMT 0)
I haven't had a problem with joint pain from Remicade, but it is possible. Is she getting pre-medicaitons?
Posted 11/10/2011 2:22 PM (GMT 0)
I have terrible joint pain coming off of prednisone and when I began remicade I was tapering pred too. Not sure if it could be that?
Posted 11/10/2011 4:43 PM (GMT 0)
I was diagnosed in March 2009. I had no joint pain. I was put on remicade in July 2009 5kg/every 8 weeks.  No joint pain.  Just achy after my infusions and I had a reaction my first one with chest pain and such.  Anyways, in August 2010 they upped my dose to 7.5kg/every 8 weeks.  I swear my joint pain started a week after my infusion and has continued since then.  I am still on the remicade and the same dose and my joint pain is horrible.  I can live with it and do but only because I got the same thing it is my UC causing it not the remicade.  My doctor said I have had UC longer now and that happens.  I find it very odd that it didn't start until then.  They had me see a RA doctor and they said it was my UC not anything RA related and now I was just diagnosed with autonomic dysfunction and now they say that can cause my joint pain also.  So I honestly think it is the remicade but they say no.  I have done so well on it I won't go off it until it doesn't work but I feel like I am 100 years old. Ugh.  I hope she feels better.  I don't care what the docs say I know it is the remicade for me.
Posted 11/12/2011 2:12 PM (GMT 0)
Thanks for your answers. The pain comes the week before her infusion. The Dr says she should move the infusion up , my daughter is stretching it to 9 weeks because of her work schedule.

This will be a problem because she would like to have the infusions on a day off from work and tries to work it out to school holidays..

They do premedicate her with benadryl and steroids.

To allswell, the treatments are working very well for her uc, they worked immediately.
Posted 11/12/2011 3:02 PM (GMT 0)
I think never having an issue with joint pain, then getting it after several doses of Remi.... I would definitely contribute it to the Remi.

I get pain in the joints of my fingers about week #5. I had it before I started the remi though.
Posted 11/12/2011 6:38 PM (GMT 0)
Unfortunately, I had to quit using Remicade after about a year because of excruciating joint pain. The pain started after an infusion about 8 months in, and I tried to hang on because the Remi was working well. I did a few more infusions but it became unbearable (I actually had to take narcotic pain killers for a little bit, which I really didn't like doing) and I had to quit. I even tried pre-medicating with prednisone but it didn't work. The joint pain went away after the last infusion was out of my system. On a positive note, I have not had joint pain since I started Humira, so that could be an option for your daughter if the joint pain can't be resolved while on Remicade. I'd try first try pre-medicating with benadryl and/or prednisone if you aren't doing that already.
Like someone else who responded, I also get terrible joint pain when tapering from prednisone. If your daughter is tapering or was recently on prednisone, it could be the culprit.
I hope your daughter is able to resolve this and feels better soon.
B
Posted 11/13/2011 2:37 AM (GMT 0)
I got excruciating join pain about a week after my first Remicade infusion. It was horrible and not something I could have lived with. It felt like my joints were being stabbed with an ice pick over and over. No pain medications helped. It kept me awake all night and I could barely function. Though my doctors did say it could be from the Remicade, they also said it could be UC-related arthritis or from prednisone. I thought that was unlikely since I had never had arthritic joint pain before and had also tapered off prednisone at other points in the history of my disease with no pain. My gut feeling was that it was from the Remicade. I hadn't wanted to be on Remicade for the rest of my life anyway and wanted surgery instead. I was only planning on taking three infusions to heal me up for the operation since I had been in the hospital with a severe flare and really sick and weak. After the joint pain reaction, my last two infusions were cancelled, and I went for the surgery sooner than expected. Fortunately, other than the joint pain, the one infusion worked wonders and at least I was able to go into surgery in fairly good health. 6-8 weeks after the infusion (while still tapering off of prednisone) my joint pain finally went away. I feel confident it was from the Remicade. The drug is amazing in its ability to heal the colon, but unfortunately, it doesn't seem to agree with everyone.

The only thing that I often wonder about when doctors end up bumping up the Remicade infusions to make the joint pain go away... isn't that counterproductive if it is actually the drug that is causing the joint pain problem? Wouldn't putting more of it in someone's body actually make things worse?
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