remicade and muscle twitching

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jpnutritionfirst
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Date Joined Apr 2009
Total Posts : 383
   Posted 12/24/2009 3:51 PM (GMT -7)   
is anyone on remicade right now and having whole body muscle twitching while at rest?
Crohn's Colitis diagnosed 6/08
SCD since 4/09
Remicade since 6/09
Boswellia + Acidophilus
Remission


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 12/24/2009 6:42 PM (GMT -7)   
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...
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


jpnutritionfirst
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Date Joined Apr 2009
Total Posts : 383
   Posted 12/24/2009 7:20 PM (GMT -7)   
i've seen a neurologist and had my electrolytes confirmed to be normal many times. not sure what's going on.
Crohn's Colitis diagnosed 6/08
SCD since 4/09
Remicade since 6/09
Boswellia + Acidophilus
Remission


BWS27
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Date Joined Nov 2009
Total Posts : 37
   Posted 12/24/2009 10:36 PM (GMT -7)   
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.
29 year old husband and father of 2, Diagnosed with Crohns and resection surgery in Jan '09 (same ER trip), currently not winning the battle with pain, taking: 6mpPentasa, Prednisone and every vitamin possible! 
 
 

What lies behind us and what lies before us are tiny matters compared to what lies within us." -- Ralph Waldo Emerson



jpnutritionfirst
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Date Joined Apr 2009
Total Posts : 383
   Posted 12/25/2009 8:54 AM (GMT -7)   
well i'm on organic scd diet so i don't think i'm eating poorly
Crohn's Colitis diagnosed 6/08
SCD since 4/09
Remicade since 6/09
Boswellia + Acidophilus
Remission


LDR1109
Regular Member


Date Joined Dec 2009
Total Posts : 24
   Posted 12/25/2009 10:06 AM (GMT -7)   

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.

 

 


Homeboy
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Date Joined Dec 2005
Total Posts : 637
   Posted 12/25/2009 7:13 PM (GMT -7)   
Rider Fan said...
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...


I suspect low potassium too, some bloodwork would give you an idea.
Humira 2 times a month, Lialda 2 X day, Phenergen PRN, Remeron 30mg day, Pain Meds, Zantac 300mg 2 X day, Prednisone 20mg Every Other Day, Vitamins;
semi@jengland.info -- FaceBook


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 12/25/2009 7:18 PM (GMT -7)   
as i said before, electrolytes were checked multiple times and were normal
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


PV
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Date Joined May 2006
Total Posts : 1177
   Posted 12/25/2009 7:30 PM (GMT -7)   
I'd suggest going to a neuroligst, and getting a head and neck MRI, and a nerve conduction study to make sure that the remicade is not causing any peripheral or central nervous system problems. Just to be on the safe side.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 12/25/2009 8:27 PM (GMT -7)   
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
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Sgrobos
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/19/2010 6:31 PM (GMT -7)   
jpnutrition....

I am happy to finally find someone that can hopefully help me.
I am going through exactly what you are talking about here.
I'm a 28 year old male diagnosed with Crohn's disease at 14
I was on remicade for a year and a half and having success controlling my fistular crohn's disease.
I had an infusion in December 2009 and 7 days later had pustular psoriasis break out all over the palms of my hands and the bottom of my feet.
Breakout lasted 2 months and was clearing up with topical Cordisone. I went to see my GI who told me to continue with my next scheduled infusion. I did and it was a huge mistake. 7 days after infusion the same symptoms re-appeared much worse. It's also all over my scalp this time and I've lost a lot of hair with what appears to be alopecia areata. My muscle twitches are driving me insane. Very frequently on any and every muscle. Any advice?

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/19/2010 7:01 PM (GMT -7)   
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.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 4/20/2010 3:18 AM (GMT -7)   
When was the last time your B12 levels were checked? Prior to starting monthly B 12 injections, I was getting a neck twitch. This happened while on Remicade & after I had to stop. Once the B 12 injections started, the twitch went away.
 


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/20/2010 4:36 AM (GMT -7)   
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
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Angela N
Regular Member


Date Joined Jan 2006
Total Posts : 82
   Posted 4/20/2010 1:30 PM (GMT -7)   
I used to take recicade...by the time i got home it would make my feet and hands feel like they are asleep. They would tingle...For the rest of the day. it would be gone by morning though..it was very a very uncomfortable feeling....not on remicade anymore...i take cimzia....
Diagnosed with Crohns 15 years ago...After my sugery 15 years ago I havn't had any flare ups until now...I am currently taking Pentasa and the Cimzia shot..I am 43 years old..


Sgrobos
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/24/2010 12:09 PM (GMT -7)   
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.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 4/24/2010 3:44 PM (GMT -7)   
Hi,
 
I know exactly what you are going through.  With me it started with a twitching on my right cheek under my eye.  Then it went to my arm.  I discussed this with my GI and I had a nerve conduction test done by my Neurologist and it was determined that it was from the remicade.  It made sense to me as it began after I started the remicade and stopped when I discontinued the remicade.  Be aware though, the next step for me was remicade induced Lupus.  Joint pain that jumped around from side to side like crazy.  I compare the pain to that of a periannal abscess.  All of this happened within two years of taking remicade.  Should this happen to you see a rheumy ASAP as you will need prednisone and MTX.  Nothing else will touch it.  I also have B12 shots monthly so that did not play a role in it for me.
 
All the best,
Julia
 

Sgrobos
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/24/2010 7:40 PM (GMT -7)   
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

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/25/2010 11:19 AM (GMT -7)   
Julia, what do you mean you developed lupus? I thought you stopped the remicade? what do you mean by "next step."
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 4/25/2010 11:23 AM (GMT -7)   
im also on mtx n you should tk folic acid with it

lyn
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jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/25/2010 11:37 AM (GMT -7)   
this is from an UptoDate article regarding TNF drugs and lupus:

Anti-TNF agents — Most cases of drug-induced lupus are characterized by skin and pleuropericardial abnormalities, along with the formation of autoantibodies such as those to dsDNA, the Sm antigen, or histones. Renal and neurological manifestations are extremely rare. Most cases of drug-induced lupus associated with TNF inhibitor use resolve completely upon discontinuation of the TNF inhibitor.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 4/25/2010 4:57 PM (GMT -7)   
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

Sgrobos
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/26/2010 10:29 PM (GMT -7)   
Hi Julia...
When you stopped taking remicade how did you control the periannal abscess'?
I already have a painful abscess only a few months after stopping remicade. Did you try another biological? Remicade seems to be the only thing for me that actually controlled my fistulas.

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 5/24/2010 4:04 PM (GMT -7)   
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.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc
Asymptomatic


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 6/17/2010 12:27 PM (GMT -7)   
i just wanted to update this thread, i stopped the remicade and the twitching persists (it's been 2 months and 2 weeks since my last infusion)
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc

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