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Neck pain and leg cramps after Remicade?

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Posted 9/22/2011 2:32 AM (GMT 0)
I had my second loading dose of Remicade today and I started getting some pretty bad neck pain. I have a bad neck anyway and all I have to do is twist it wrong while sleeping and it gets "thrown out of whack". I had some minor neck pain when I went in this morning for my infusion but now I can't even turn my head to the right. When I turn it left it's fine. But to the right, it's like it's super stiff and "stuck" - like the muscles are locking up.

Also, I have some sharp cramping in my thighs. I had that after the first infusion but not that bad and it went away after a day or two.

Has anyone got these side effects from Remi?

Btw, I plan on calling my GI tomorrow and ask him if my neck is still bad.
Posted 9/22/2011 5:34 AM (GMT 0)
I've been getting remicade for approx 5 years now. Never had any reactions to it..

strike that. if the nurse administered it too quickly, then I got really bad headaches.

Other than that no problems.

 

Posted 9/22/2011 11:02 AM (GMT 0)
Ok, I woke up this morning and the stiff neck is still stiff just not as bad but now I can't move my right arm at the elbow. It feels like someone is taking a knife to my left shoulder blade as well.

Lordy, I sincerely hope that any future Remi infusions won't cause this because this is so not worth it!

Thanks for the reply SurferChick....
Posted 9/22/2011 11:07 AM (GMT 0)
I used to get horrible let cramps when I was on Remicade but I'm not sure that was the reason for it. I think it was a combo of the drugs and just being in poor health at the time in general. Could be a connection though.
Posted 9/22/2011 2:21 PM (GMT 0)
I get a little bit of joint stiffness, especially in my knees the day after the remi infusion. It usually goes away the next day.
Posted 9/22/2011 4:42 PM (GMT 0)
i haven't noticed any joint problems or soreness specifically from the remicade. just headaches.
Posted 9/22/2011 4:45 PM (GMT 0)
my remi symptoms are: being cold during the infusion after the infusion, I can have a headache (hasn't happened after my first few infusions). I do get very tired after and infusion and have to take a nap (I never nap!) and am usually pretty tired for the next couple of days.

My neck and shoulders are extra tight but I think that is more stress related for me.
Posted 9/22/2011 6:52 PM (GMT 0)
Yes to the cramps. I get muscle cramps in my legs, feet and even my hands....no to neck pain though.
Posted 9/22/2011 6:54 PM (GMT 0)
Red, you obviously did your homework before embarking on remi. I can only hope that the joint problems are indeed temporary. Does your research indicate that joint issues are quite common with the initial doses of remi? I'm a bit apprehensive as I will probably be starting it in a month or so. I'm currently on a 15mg dose of pred right now and my joints always start to ache when I start tapering. I just hope this isn't going to exacerbate things when I eventually start. Would it be best to be off pred when I start or does it not matter?
Posted 9/22/2011 8:45 PM (GMT 0)
I was on 20 mg of pred when I began remicade, I had immediate effects (withi 2 days) once I got off the pred symptoms came back but now I am going 1x day with blood, which is better than I was 2 months ago.

Getting off pred I had horrible pain with joints and muscles the worst 2 months ever, it hurt to walk down stair so bad I could only do one at a time. I have been off pred now for 3 months and I feel much better, still have some pain and soreness but not like I did before.

Also when I was off pred and not on remicade, it was very painful too, I only lasted 2 months of pred that time.
Posted 9/22/2011 9:35 PM (GMT 0)
Elbow still hurts a little but now my first 3 knuckles of both hands are red and swollen, thumbs and wrists hurt........this is so not good. I had to break down and take Ibuprofen. I am definitely going to call the doc.....possible serum sickness?? But no rash, fever or swollen lymph nodes. But on a bright note - my Uc is uber quiet! lol
Posted 9/22/2011 9:54 PM (GMT 0)
Red, so the UC has calmed down but still with the joint pains. There's always a darn side effect ain't there. I repeat, I hope this is temporary. On the positive side, it must feel great to be UC symptom-free!

Beth75, you were on 20mg pred when you started remi, tapered down then UC symptoms recurred? That would lead me to believe that the pred was the one doing the biz. However you went on to say that you eventually weaned off the pred and 'feel much better' (with the exception of joint/muscle pains).
From this Red may only suffer a couple of months with joint pains.

Very reassuring.
Posted 9/23/2011 1:17 AM (GMT 0)
Truthfully? I would rather have the UC symptoms....my hands and wrist are extremely painful right now (I'm one fingering this post)...it feels like I have ground glass in my joints.
Posted 9/23/2011 1:35 AM (GMT 0)
Hi-Red--

So sorry to hear of your troubles with remicade. The first time I was on remi I lasted for about 6 months and then had to quit because of really bad joint pain. This second time I've been back on remi since February and I have had some aches and pains in joints and then in muscle--it wanders around. I was getting severe back pain right after infusion and would have to take pred for a few days for that. This last time, I took the regular 40 mg pred the night before and then instead of one benadryl, I took two and for some reason, I didn't get any back pain. Then three days later, I got severe pain in one arm muscle, and then in another leg joint--I'm beginning to think it's voodoo!
Again a couple of days on pred stopped all that.

I'll bet my adrenals are wondering what the heck is going on. I'm just going from one day to the next--but so far things have quieted down. I'd say the heck with it, but remicade absolutely stops all my UC symptoms cold. That's no laughing matter since I've been in misery with this DD for over 20 yrs and surgery is the next stop.

Good luck and I hope things quiet down for you.

Michigoose
Posted 9/23/2011 2:09 AM (GMT 0)
Jeez, this is not want you want to hear, a drug that has side effects that are WORSE THAN THE DISEASE it's supposed to be treating.

Let's sincerely hope this is NOT THE NORM!!!
Posted 9/23/2011 11:45 AM (GMT 0)
As you can see Mackster, many people have been on it with no issues. I'm just not...........normal!lol My body just responds strangely to many medcines.

I had to go to the ER last night, the pain was unbearable, hands EXTREMELY swollen and red, redness and swelling spread to my elbows and wrists. ER doc gave me a shot of Toradol and 60 mgs of pred and a script for pred to take for a week.

It feels slightly better this morning, but I am still one fingering the keyboard :)
Posted 9/23/2011 11:52 AM (GMT 0)
Ugh, Sherry, I'm sorry.

I wonder if Benadryl given during the infusion would stop the reaction?
Posted 9/23/2011 9:03 PM (GMT 0)
Well that's bummer Red, especially as you've never had to resort to the dreaded pred before now!!

It does tend to actually relieve symptoms though. (not an endorsement btw)
Posted 9/23/2011 11:48 PM (GMT 0)
Awww!!! I get leg cramps and feel very shakey after my infusions.  I also get the chest pain.  I am tired also.  I am usually fine the next day.  I just know on my remicade days to take it easy.  I always have gotten the chest pain(we think it is heart burn, we ruled everything else out, the prilosec has helped for the most part) They upped my dose to 7.5 in August of 2010 and ever since then I get very bad joint pain and it usually starts about two weeks after my infusion and lasts until about a week or two.  It sucks.  I went to a RA and they said it was my UC causing this.  It is very bad in the morning.  It is my knees, elbows, ankles, wrist, and fingers.  I just live with it until it goes away.  I guess I can tolerate it. The remicade has helped so much I don't want to go off of it yet.  I hope it isn't a reaction to the remicade for you.  I hope you feel better.
Posted 9/24/2011 6:19 AM (GMT 0)

Mackster said...
Jeez, this is not want you want to hear, a drug that has side effects that are WORSE THAN THE DISEASE it's supposed to be treating.

Let's sincerely hope this is NOT THE NORM!!!

It is the norm!!

Haven't you heard the famous prednisone song?

http://www.youtube.com/watch?v=gYlgtloOztU
Posted 9/24/2011 1:15 PM (GMT 0)
Aww, I'm sorry it has gotten so bad. Did they say it was a reaction from the Remicade? Did you speak to your GI?
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