Remicade and Demyelinating Polyneuropathy

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waitingforacure4cc

New Member

Joined : Dec 2011

Posts : 9

Posted 10/29/2012 7:49 PM (GMT 0)

@ May queen, please contact us as well to hear about remicaide and your daughters neuropathy.
We want answers too and are so worried about this drug and it's effect on people. A year ago, we sang it's praises and now, my husband can't walk unassisted, has no feeling from the knees down and spend 2 months in the hospital paralyzed from the waist down.

I am so sorry to hear of the tragedy remicaide has caused your loved one. I'd like to know more about her demyelinating degeneration and diagnosis.
[email protected]

Thank you,
Tara

Veteran Member

Joined : May 2006

Posts : 1177

Posted 10/30/2012 1:28 AM (GMT 0)

I am so sorry to hear about your husband. Taking some of these meds is a real gamble - and it is always scary. In my huusband's case, we lucked out - it turned out that his foot drop was not caused by Remicade.

His foot drop was caused by damage to the peroneal nerve bundle in his leg and the demyelination was due to the severe crohn's flare up. He has contined to stay on Remicade for the past 4 years (and is in fact on 10mgs/kg (double dose)) and is doing well.

I have read that most nervous system disorders caused by Remicade are in fact reversible. However, do keep in mind that it can take a long time to for nerves to regenerate. My husband's foot drop took over a year to resolve (he got back about 85% movement back). So, I would expect that it will take a while for the damage to reverse, and that it wouldn't go back completely to normal.

I hope you have a good neurologist who can guide you through both diagnosis, and physical therapy and recovery.

(hugs). I hope you see improvement soon

PV

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