Tingling

[kerilecrenski]

Hello everybody,

I am not new to Crohn's Disease but I am new to the website...I am 28 and a half years old and I have had Crohn's since 11 years old...I have been on Remicade (Infliximab) for 6 years now...My GI doctor just increased my dose from 5 mg to 10 mg and from every 8 weeks to every 4 weeks...Last month I noticed that my arms, legs, hands and feet started to tingle a few hours after my infusion...I just went for my infusion again April 10 and noticed the same symptoms a few hours after...I emailed my GI but it was late at night, I then called the UMASS ER and they told me it could be from too much of the Remicade for my body...Then I expected my GI to say, "Oh lets decrease the dose" but he proceeded to say I needed to see a Neurologist to investigate my symptoms and told me that I need to have a series of test to check for MS...Now I already see a Neurologist for Temporal Lobe Epilepsy...I called my Neurologist right away and explained my symptoms and he told me He didn't think I have MS at all and that he was gonna call my GI DOCTOR immediately...He told me it could be a DOSE DEPENDENT SIDE EFFECT and named some other neurological term but I forgot it...ANYONE HAVE THESE SIDE EFFECTS OR SAME TYPE OF SYMPTOMS...Please help as I am terrified now!!!!!!

 

[Angrybird]

Hello and welcome to the forum. This does sound like a Remi (aka Infliximab) related problem considering it started after the increased dosage and tingling has been a noted side effect of this med. I myself have been on it and things were fine for a while and then I had a reaction to it that made it look like I had Lupus! I am glad your neuro doc is on the case with this and is getting onto the GI, please keep us updated on what they sort out for you.

AB
xx

 

[Dazzafarr]

Hey, I'm undiagnosed although, I do get tingling
In hands, feet, legs. I actually have tingling as we speak.
I have heaps of issues by the looks of things..
My bones have gone bad so could be something like that.
Steroids do cause problems so maybe get a few tests.
Make sure 1. They have stuffed ur bones = bone density test.
2. You havent got Ankylosing spondylitis.
3. Diabetes
See ur GP and check.
If new symtoms appear get into GP ASAP.

 

[annawato]

Hi keri, I also get tingling/numbness between my big toe and second toe on both feet and often get burning feet, as if I've walked bare footed across really hot sand. Haven't mentioned it to my GI yet cos I'm scared he'll take me off remicade/inflix. I've also read that theses sort of things can be caused by deficienices in vitamin and trace elements. Definitely worth you following up with your GI and Neuro about it. Let us know what you learn,and hopefully its a temporary problem for you that doesn't require stopping inflix.

ps. also affects my hands sometimes. do you find that?
pps. welcome to the forum:rosette2:

 

[David]

Welcome to the forum!

According to www.remicade.com, what you are experiencing may indeed be a side effect of Remicade and a serious one at that. According to them, you're supposed to notify your doctor if, "Nervous system disorders—numbness, weakness, tingling, changes in your vision or seizures."

Be sure to read through our Remicade Support Forum as I'm sure others have experienced the same.

All my best to you.

 

[kerilecrenski]

thankgod

hey everybody...it seems i am ok and probably won't need to see the neurologist about MS...because i was placed on such a high dose of remicade for the crohns i was experiencing paraesthesias my neurolgist said and there are MANY different kinds of paraesthesias...i am so relieved...it is hard to have crohns disease and temporal lobe epilepsy...thank god i do have a neurologist already and didn't need to wait until may 22 to see the neurologist specializing in MS...i know dr. zawacki is amazing but he doesn't work with the brain...my neurologist and the neurologist specializing in MS work with the brain and they know exactly how drugs can effect the bain...god am i relieved

 

[annawato]

Good news Keri, I'm glad to hear it got sorted for you. I actually asked my GI about my tingling and he suggested its permanent damage from either long term flagyl use or having low B12 levels for too long. I've had the problem since before starting inflix so he thinks thats ok. SO I was pretty relieved that I didn't have to stop that especially since the tingling and burning don't cause any major problems other than worry until you know they aren't a symptom of anything else. I'm glad you brought the subject up because yours and Davids posts spurred me on to asking about it. Thankyou.

 

[David]

Anna, if the damage is from low B12 it can often be reversed! If you get your vitamin B12 levels HIGH (like well over 500) and keep them there, it's not uncommon for the damage to be fixed over time.

 

[kerilecrenski]

Yea my Neurologist really doesn't think I'm dealing with MS but I'd feel a piece of mind having it...My tingling has gone and I get B-12 shots every month

 

[kerilecrenski]

hi all...i recently posted about tingling after my remicade...i DO NOT HAVE MS...thank god...the tingling is either from too high of a dose of remicade and too often or i may have what's called peripheral demyelinating secondary to anti-TNF therapy...which is 100% reversible if i stop the remicade...so i have to have an MRI to see if i have that...my GI AND MY NEUROLOGIST BOTH think i DO NOT and it's just the dosage...so at least i don't have MS...I AM SO relieved right now

 

[David]

Glad to hear it's something that will be going away I can understand your relief, that must have been really scary.

 

[annawato]

Good news!

 

[kerilecrenski]

yea i still have to have an MRI and MRG for precaution...2 ms specialist, my regular neurologist and my GI all said i have no reason to worry...they all believe its just a remicade side effect

 

[lizzy]

Hi!
Glad to hear you found out it wasnt MS! I am have been on infliximab since December and I'm now on 6 weeklys. In the last week I have been getting tingling in my hands and calves!!! It started with quite bad muscle and joint pain when I went from sitting to standing and now its just the tingling and my hands sometimes stop working :s
I saw my gastro and she said I was low on potassium! So I've got potassium tablets to take and we'll see by Monday what happens. Basically I just wanted to let you know just incase its an avenue they havent thought of! And I know how you feel, the tingling is so weird! Hope we both get fixed up soon.

 

[kerilecrenski]

that is good izzy...yea they are doing the MRI and MRG to test for a few neurological things even though they are 99.99% sure it's just the remicade causing this...if you read my earlier post i went from 5 mg every 8 weeks to 10mg every 4 weeks...when my gi moved my dosage up i started to get the tingling...so the first month i got it i didn't think much of it but then it happened again on the same day as the infusion...so i called my gi and he wanted me to get tested for different things because it is rare but remicade can cause MS...and i got this info from the MS neurologist at the university of massachusetts medical school...even though 3 neurologist and my gi think its just the remicade they're being careful.