Side effect of Remicade?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
May 3, 2011
Messages
34
I just started Remicade. I am due for my second infusion this week. This weekend I have had the weirdest aches and pains. My jaw was sore, now my neck, and my legs ache. I also had chills last night but no fever. I had three infusions of remicade a long time ago (1998), but I was a kid and don't remember if I had any side effects. Anyone else had this problem?
 
I am 6 days out from my first, second is a week from tomorrow.....nothing so far, well I went to the gym so I'm sore anyway....I hope it gets better for u. Seems like some people get joint pain but goes away?
 
I'm getting my 3rd infusion in about a week and I've had a few headaches but it might not be related to the Remicade. I haven't experienced any of the other side effects you described. Good luck I hope it works for you and hopefully those side effects get better or at the least aren't as bad as the problem they are fixing ;)
 
Yes, I have experienced some joint pain ever since starting Remicade a few weeks ago. Mostly in my kneecaps, ankles, and hands. It's not a very strong nor sharp pain - more achey and sore than anything. I am almost positive it is a side effect of the Remicade.
 
on my fourth infusion I had a hive reaction. They gave me benedryl. about 6 days later I developed severe joint pain> My infusion was on 3/30. I am still in pain. I understand it's the mouse protein I am having a reaction to. Other than that Remicaide worked very well. I thought it was my miracle drug.
 
I have been on Remi for 2 years now. Getting it every 6 weeks. I used to get severe joint pain. My hands would contract and I couldn't unbend my elbows! Also had severe hip and knee pain. My doctor gave me dexamethasone to take before each infusion. It works great for me. I still get some minor joint pain but nothing like it used to be.
 
I made it through my second infusion, but not without terrible heartburn (never had before) and nausea. My doc seems to think my nerves about the whole thing are the problem. He may be right. Something about being infused with a medication that I have to take benadryl with freaks me out. If my appetite would pick up and the cramps would go away, that would be encouraging.
 
I recently had my fifth infusion.... I usually feel great while on Remi but I have been extra tired after this last one. I think you should try and calm down before each infusion, and during. Bring something to keep your mind elsewhere. I love bringing funny movies with me because it takes my mind off of what is actually going on. Concentrate less on the meds and more on the way you want to feel.

I get joint pain all the time while on Remi. In the mornings it is very hard to walk, my knees, ankles, and fingers become very stiff. I have heard many different people on Remi say that they have had similar experiences with it. Personally, the stiff joints are worth not ending up in the hospital and feeling better.

I hope Remi starts to work for you!
 
I just had my first infusion about 5 days ago. I was very tired afterward and i have been getting night sweats and my chest broke out in small pimples. I also have some joint pain mostly in my knees and ankles. Headaches too. But I am also still on prednisone so some of it could be related to that.
 
I am comforted to read about others with joint pain. I have had five infusions, the last one the nurse forgot to administer the liquid Prednesone. That was the only change from the previous infusions, so I don't know if that made any difference. At first my little finger behaved like arthritis. Then my neck ached after skidooing, which OK the trail was really rough in places. But it persisted for almost a month. Then all I did was go golfing and my right shoulder at the socket kept me awake. That lasted about a week. I shoveled a bit of dirt and my right elbow kicked in. I needed pain relief from that. In the mean time my right knee ached, weird it was the tendons in the back of the knee, off and on. Then it will move to my right wrist, left ankle, in the front. Right now it's my fingers. It is moving all over the place. I go through my day aware of my joints. Sometimes is is mild, other times it is an 8 on the pain scale. I have never had to take pain relief for this before ever. Nothing like this has happened to me before I was put on Remicade. Does this sound familiar to any one else?
 
I was just reminded as I stood up. My hips have ached for years, now they ache more. Yay. :-(
 
I am 24 years old and have never experienced joint pain before Remi. Started my infusions in March 2011. Every morning it is hard to walk when I wake up. If I sit for more than a half an hour it takes me awhile to get up because my knees and ankles ache and become very stiff. The past few days I have noticed intense pain in my jaw. I used to get jaw pain when I was younger (after braces) but have never experienced pain like this. I think Remi has something to do with it, maybe it is just the colitis. Not sure... but either way it is painful stuff.
 
I only had my first infusion of remicade last week and while I have not experienced any joint pains I have been having an issue with muscle cramps in my feet and hands which seem to just seize up every now and again for a few minutes. I also get this strange burning sensation on a small area of my leg (always the same place) just above the knee every now and again. I am sure they must be side effects of the remicade as its only been hapenning since a couple of days after the first infusion. The remicade has so far been a miracle drug for me even after only a week and so ive just accepted these minor side effects as something I would rather put up with compared to how I felt before the remicade treatment.
 
When I was on Prednisone I was having muscle cramps in my feet and hands as well. When I started Remi, my doctor had me on a high dose of liquid Prednisone during my Remi treatments. This extra Pred caused me to cramp. Eat extra potassium and drink a lot of water. Each of those helped the cramping stop. Good luck! Remi is amazing
 
When I was on Prednisone I was having muscle cramps in my feet and hands as well. When I started Remi, my doctor had me on a high dose of liquid Prednisone during my Remi treatments. This extra Pred caused me to cramp. Eat extra potassium and drink a lot of water. Each of those helped the cramping stop. Good luck! Remi is amazing
Hi,

I did have liquid pred given to me before they gave me the remicade infusion so sounds like it could well be the pred that is the cause. Thanks for the tip with the extra potassium and water which I will give a try.
 
I'm scheduled for my 5th dose of Remi at the end of this month; I love this drug as I can run a marathon a day for the first few weeks after my infusion. That said, I do experience the joint pain albeit slight. But a new symptom has reared it's ugly head: Mood swings smilar to Pred. Has anyone else experienced depression and/or agitation as they grow near their infusion date?
 
I've been on and off Remicade for two years, had my last infusion Thursday. I'm totally exhausted and my chest feels heavy, also neck pain. Never had any of this before, but they gave me a triple dose. I figure I feel so crappy because it's stopping the mammoth flare I've been enjoying for three months now.
 
Do they always give you liquid steroids with the Remicade ? I have my 1st infusion booked next week i think (spoken to GI , just waiting for letter to confirm appt) and i told him i really do not want any more steriods (only just got off them) Is it necessary ???
 
No I never took them for a Remi infusion, but since this is your first one, it's better to be safe. Should you have a serious allergic reaction, it will provide some protection.

Once you know how you respond, I think it would be OK to ask not to have it.
 
Hi all,
Brandon is doing really well on Remi. He has had 3 infusions, gets the 4th in 2 weeks. He had severe joint pain before the REMI after the REMI it goes away. His problem is with a rash. It develops about 1-2 weeks before the next infusion. The Doc did not give him anything with the REMI at first, now I give him Benadryl before each infusion and for 48 hours afterward. He was also started on Methotrexate low dose 5mg/week by the Rhuematologist to prevent a build up of antibodies against REMI, seeing as it is working so well. He gets occasional stomach cramps and diarrohea but is in effect a normal 10 year old while on REMI.
Trina
 
Joleen, for my last 2 infusions I had hydrocortisone 2hrs before the remicade. They only gave me it because I wasn't on azathioprine (had a bad reaction to it) but now they've started me on 6MP (which so far looks like I'm ok with - yey!) I no longer have to have the hydrocortisone. It's something to do with stopping antibodies developing. Are you taking aza or 6MP? Good luck for the infusion - I hope it works well for you :)

Soybean xx
 
I was on 6 mp but my GI told me to stop taking it as i was vomiting , and Aza made my Joints too sore. I'll think i'll call him on Monday. Really don't want the Hydrocortisone again (had it a lot in hospital) Thanks for the help :)
 
Joleen - I get solumedrol IV just before my infusion - I haven't noticed any side effects from that single dose - I also get benadryl IV with it - didn't always get these, only after my not-so-lovely skin rash developed last year (which I STILl think was strep-related!) - and my doc wasn't 100% sure it wasn't related to the remicade.
 
I spoke to his nurse this morning and she said as far as she know he doesn't do that , gonna try and talk to him but he's impossible to get hold of.Really don't want steroids , purely from a vanity point of view, getting married in 6 weeks so really don't want a moon face for my photo's (only just started looking like me again) Thanks for the advise guys :)
 
:congratualtions: I think if you tell him just what you said above he'll understand. If you can get ahold of him, that is...my doctor gave me his email address, I wonder if yours might do the same.:ysmile:
 
I work for the NHS myself (as does he) and there is a government intranet thing so i can get his e-mail quite easy , Good idea (didn't think of that lol) Will send him a msg tomorrow. Thanks :)
 

Latest posts

Back
Top