remicade and muscle twitching

I've never heard of that related to remicade. Are you fatigued? Tense? Low potassium or magnesium?

Perhaps a complete neurological exam is in order...

im not sure if it is from the remicade, but I also suffer from the "twitch" you have. However, mine is only in my left shoulder, it gets annoying at times! Im not sure what it comes from, but I am sure it has something to do with the mass amounts of crap I feed my body all the time.

I have been on Remicade for quite some time, and I also experience muscle twitches.   I never associated them with Remicade, but I suppose anything is possible.

as i said before, electrolytes were checked multiple times and were normal

didn't get an MRI, but had an EMG and nerve conduction study which were normal, neuro exam was normal too, but i have going back in february

Hey Sgrobos

I feel your pain, I will try to help you the best I can here.

I'm still not sure if Remicade is the cause of the twitching, nor is my neurologist. I still have twitching (it's been going on since June 2009) but I have gotten used to it now. It's certainly possible the twitching is related to remicade, or it could represent something called Benign Fasciculation Syndrome. The reason I think it might not be Remicade is that a ton of people have identical symptoms and are not on remicade (as indicated by the message boards on aboutbfs.com). Also, my twitching doesn't get better as time goes on between infusions, and it doesn't get acutely worse right after an infusion. There might be some weird mechanism going on here that doesn't correlate with the timing of infusions. What's your experience with timing?
You should be reassured that I've had 2 neuro exams already and a nerve conduction study/EMG that were completely normal. This is truly a benign symptom but I understand how it can drive you nuts.

At the time of onset I was on high dose prednisone and was highly anxious. The twitches actually did drive me absolutely insane. I felt like Remicade was literally chewing up my nerves or that I had ALS or MS. I actually got a point where I was suicidal. If this is really bothering you and perhaps disturbing your sleep, I would recommend asking your doctor if you can try an antidepressant like an SSRI. I took one for a few months along with xanax intermittently to get through it. Eventually I got off those meds and got used to the twitching. It doesn't bother me much anymore, but it still occasionally is annoying. Also swimming in a pool or going in a hot tub makes you not feel the twitches which gives some relief. Another thing that worked for me for a while was neurontin at pretty high doses, but I stopped taking that too because i got used to the twitching.

In any case, my plan is to get off of Remicade in March of next year and perhaps switching to Humira. That will be the final test to see if this is truly due to remicade. I'm not too afraid of getting a flare because I will have been on organic SCD diet for 2 years. Though both drugs have the same mechanism, my doctor says they can sometimes have completely different side effect profiles and efficacies. This might be something you want to bring up to your doctor too.

my vitamin B levels are always normal, but I suppose it's worth a shot
my twitching is all over my body, not just in my neck so I'm not sure this is the same thing here

Hi JP

Thanks for your response.

I was on remicade for a over year without any side effects. I have stopped taking it however only recently missed my first dose. The muscle twitching, pustular psoriasis and hair loss have only come about after my past 2 infusions. (December 2009 and February 2010), with the symptoms much worse after my last dose in Feb and still severe. It's so bad on my hands and the bottom of my feet it's difficult walking.
I'm only taking pentassa right now but my Crohn's is active and I'm considering Humira or some other biological I can't think of right now.

Hi Julia,

Thanks for the information.
I have had crazy pain in my hips. Lasted for a few days on each hip. It was so severe I couldn't roll over in bed.
What is a rheumy? Will the prednisone cause my psoriasis to flare? Because that is the most painful symptom right now. My dermatologist wanted me to hold off the prednisone until the psoriasis has subsided.

Thanks,

jeff

im also on mtx n you should tk folic acid with it

lyn

I did discontinue the remicade when I developed remicade induced lupus. The twitching started a year or so before that and I made the decision that I could handle that and stay on the remicade as it was helping my periannal crohns where nothing else would. When I developed the lupus though it was extremely painful and there wasn't a decision to make - I was off the remicade period. It took 1.5 years for the lupus to go away - it wasn't right away by any means. There are a few others here that developed the lupus also, so I do not think it is that rare. Hopefully, this will never happen to you, I was just telling you because that is how it all started for me.

Sgrobos - A rheumy is a rheumatologist which would diagnose Lupus (joint pain). I have never had psoriasis so I'm sorry I can't help you there.

Julia

Julia, how long did it take for the twitching to go away after you stopped remicade? I stopped the drug and am hopefully optimistic they will go away.