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Aches and pains 10 days post first Remicade infusion

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Ulcerative Colitis
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Posted 10/28/2011 1:32 AM (GMT 0)
I received my first Remicade infusion for UC ten days ago. The last 4 days my bathroom trips have been increasing. Today, it seems that I can't ever get my bladder emptied. I was also up all night going. There is a constant pain in my abdomen and lower back pain. Over the two hours the back pain has moved up to between my shoulders and the middle of my back. The pain is so intense that I can no longer even feel the abdominal pain. I don't feel any pain when I urinate, only pain down 'there' when I strain myself moving around or lifting my son. The Remicade helped me fight off a 3 month battle with my UC, but today I did a have three bowel movements. All were normal, but I felt pain in my gut during the process.
Also, it seems my tolerance for pain in general is decreased. I stumped my toe Sunday and I thought I was going to die the pain was so intense. Two toes are bruised up and battered, but the xray showed no fracture. My toe hurts so much I swear there is possibly a fracture that has gone unnoticed.
I contacted my GI and his nurse told me to see my primary, who can't see me until next week. My next infusion is Tuesday.
Is there anyone with any advice or experience? The Remicade site makes it seem like we MUST be evaluated immediately for anything... but my GI is really laid back about the medication. Should I be concerned, or is this normal?
confused
Posted 10/28/2011 2:01 AM (GMT 0)
I had the abdominal, joint and muscle pain too after my first infusion. It got better just in time for my 2nd infusion. The second infusion caused my hands and elbows to swell painfully. Both times I wasn't premedicated. I am going in for my 3rd next Tuesday but this time I am getting IV Benedryl and steroids. If I still have a reaction my GI is pulling me off of it.

Did you premedicate?

But no, no that is not normal and perhaps you should talk to your GI more about. If he doesn't listen then it may be time to find a new one.
Posted 10/28/2011 2:15 AM (GMT 0)
Ugh - I'm sorry to hear that you had a reaction. I hope it works for you this time. I've heard wonderful things about this drug. Lets hope it lives up to the hype :)

I had IV benadryl during my infusion because I started itching pretty bad and my arm was hurting. I also have pain in my left arm and numbing in my hands. I keep dropping things out of my left hand. I had no idea any of these things were possible. Of course the website has a mile long list of side effects, but so does Tylenol. I never in a million years thought I would feel like this. I'm beginning to feel a little crazy.

I will be taking oral at bedtime the night before and the morning of next time because the IV benadryl was very painful. I guess I have no choice but to gamble with the Remicade.

I'm just so scared that I may have an infection that requires antibiotics. I have a horrible history with C.Diff infections and antibiotics. My only son's first birthday is next month and I CAN'T be hospitalized again!
Posted 10/28/2011 2:16 AM (GMT 0)
Oh yea - and I think you're right about finding a new Doc.
Posted 10/28/2011 11:15 AM (GMT 0)
You think you might be more prone to infection while being on Remi? That is always not the case. Have you ever been on another immune suppressor such as 6mp or Imuran? The reason I ask this is because I used to get sick A LOT! Every infection you can think of, I got at one time or another. But once I was placed on 6mp, I hardly ever get sick now. And that hasn't changed since starting the Remi. I mean I do take extra precautions, such as washing my hands more, I don't let anyone in my house if they're sick (can't stop my kids though! lol) and staying away from sick people.

So I hope that will be the case for you. However, it seems that you may not be able to take Remi. The numbness in your hands is a bit concerting. Did you happen to mention that to your doc as well?
Posted 10/29/2011 5:08 PM (GMT 0)
They upped my remicade from 5kg every eight weeks to 7.5kg every eight weeks last Aug and I swear since then my body hurts.  I mean just hurts.  My knees one day my back the next.  Then my fingers, elbows, wrists,etc.  It sucks.  I feel like I am one hundred.  I told my GI and I went to a ra they said it was my uc.  Well I never had aches and pains like that before they upped my dose and then they just diagnosed me with autonomic disfunction and said it was from that.  Oh well.  I just deal with it but I swear it is the remicade but the remicade has helped me so much I will live with it until it stops working. My doctor also says call me eveytime you get sick or have a issue because of the remicade.  Yah right I would be calling all the time in the winter. lol
Posted 10/29/2011 6:23 PM (GMT 0)
My PCM took me in yesterday and ran all labs stat. All my values are perfect. No infection.

Well this is all results from my first infusion. I spoke with my Doc yesterday, also the head nurse at the infusion clinic. They both told me that these are UC symptoms, that my body is letting me know I am flaring soon. So my Doc mention possibly increasing my dosage next time. I refused that option. I would much prefer a few infusions to see how my body reacts.

If this is from UC, why have I never felt like this the past 7 years I have lived with this disease?

I'm confused.

The nurse told me that many of her patients complain of body aches and fevers about a week before the next infusion. This sounds like Remicade withdrawals to me. Any thoughts on that idea??
Posted 10/29/2011 6:25 PM (GMT 0)
I forgot to mention my PCM prescribed a muscle relaxer because she believes I pulled a muscle, not that my back pain is UC related. I took it, and fell asleep. I couldn't tell you if it actually worked. I'm in pain again today and I will not take the med again because I would much prefer to be awake playing with my son.
Posted 10/30/2011 2:26 AM (GMT 0)
That just annoys me to no end...when doctors are so quick to blame everything on our Uc. If you have never had these aches and pains before starting Remi than IT IS the Remi. I never had those pains and swelling either UNTIL I started the Remi but my GI knew that this could happen and is taking it seriously.

I'm not sure about the withdrawal thing either. I am at the end of my 6 weeks and I am to go in for my 3rd infusion in 4 days but I feel okay.
Posted 10/30/2011 5:27 AM (GMT 0)
I had pain start in my lower back 5 days after my first infusion. It worsened over the following week to the point where it made me cry and writhe around on the floor in pain. I couldn't walk or hold a pen when it was at its worse. It was strange in that it started promptly at 1 a.m. each night and eased up by 8 a.m. It felt like a stabbing pain and was akin to the pain level of a broken bone. Another weird thing was that it migrated to different joints each day.

Though the doctors acknowledged that it could be from the Remicade, they also said I might have developed UC-related arthritis or that it might of been from Prednisone. I was skeptical. To develop sudden arthritis??? To have Prednisone suddenly cause a problem when I had been on it numerous times before??? The Remi was the new thing in my equation and I was quite sure that was the cause. This was confirmed when my future infusions were cancelled and the pain completely resolved in 8 weeks once the drug left my system. I was still tapering off of Prednisone at that time, so again, I knew it wasn't from that drug.

I was never interested in trying another infusion. I took the severe joint pain as a sign that my body hated that drug. There was no way I could tolerate that level of pain and opted for surgery instead. I am very happy and am just glad that the pain went away. Nothing I ever experienced with UC or from surgery touched the pain I felt from Remi.

Hopefully your pain from the Remicade isn't as bad and will resolve as time goes on or maybe with pre-medication or a slower infusion rate as some have mentioned. It is a miracle drug. I can't believe how fast it ended my flare when all else failed. The side effects were just something I couldn't tolerate. I would advise paying attention to your body though... and realize that most doctors seem to have very little knowledge of the joint pain/Remicade connection. There are, however, countless stories of people experiencing the exact same thing out there if you do even a cursory internet search. And even the FDA website mentions joint pain as a possible delayed reaction.
Posted 10/30/2011 7:48 PM (GMT 0)
That is what they tell me. That it is my uc. Well how come I never had the pain for a year an a half before I took it. Ugh!!!
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