Remicade side effects - brain lesions

I RonRob Welcome to HealingWell, I never heard about that as
a side effect from Remicade. I did Remicade for 5 years with no side effects. the reason I stopped the remicade was it got to expensive for the infusion.

Do you know if there bad side effects taking Remicade, Prednisone, Azathioprine together?

Pradalover

I have been a "poster child for Remicade" for several years.  I was on a 7mg/kg of body weight dose every 6 weeks, for several years, and my RA symptoms had just about disappeared.  I loved it.  My blood work and other tests were all perfect. 

Then I  started with strange sensations in my finger tips, all 10 fingers.  It was/is not so much tingling as a hypersensitivity.  I am constantly aware of my fingers.  This plus a marked decrease in the strength in my hands.  I saw my Rheumatologist on a Friday, he ordered a brain and upper spinal cord MRI for Monday afternoon, and Tuesday morning he called to say I had lesions in my brain.  I saw a Neurologist, had an EMG and NVC to test the nerves and muscle activity in my hands and arms, both of which showed abnormal loss of strength and marked weakness.  I then had a spinal tap and I am waiting for the results of that to come back.

Both doctors seem positive that I have Multiple Sclerosis, brought on by the Remicade or just developing by itself.  The results of the tap are expected to show certain types of proteins that will determine the cause.  Either way, I will no longer be given Remicade.

 

The plan, at the moment, it not to treat the RA with anything other than Methotrexate. There are drugs available that will help both RA and MS, but I'd have to stop the Methotrexate, which I've been on for 10 years or more. 

My Rheumatologist, who is wonderful, said, if this if from the Remi, I will be the 3rd patient he has had since he stared using the drug.  The Nuro MD is not familiar with this side effect at all.

I had my last infusion 6/27, and I'm feeling OK, but I am extremely fatigued.  This could be from MS or RA.

I hope that you get worked up and learn what is causing your problems, dealing with a known is easier than an unknown.  If I can help or share any other information, I'd be glad to.  I'd love to know what your final result is.

Good luck and God Bless.

I belong to another forum for spondylitis. There are several people there diagnosed with MS from taking Remicade. From the Black Box Warning on Remicade:
"REMICADE and other agents that inhibit TNF have been associated in rare cases with CNS manifestation of systemic vasculitis, seizure  and new onset or exacerbation of clinical symptoms and/or radiographic evidence of central nervous system demyelinating disorders, including multiple sclerosis and optic neuritis, and peripheral demyelinating disorders, including Guillain- Barré syndrome. Prescribers should exercise caution in considering the use of REMICADE in patients with these neurologic disorders and should consider discontinuation of REMICADE if these disorders develop."

Ronrob,

First, I am sorry about your situation.  I do recall that the TNF inhibitors, like remicade, enbrel, etc..., can cause MS brain lesions.  I do think it is rare, but is a listed side effect for all of the TNF inhibitors, maybe for all of the biologics in general.  I thought, though, that it was reversible once the drug was actually stopped?  I guess maybe you will find that out once you see the neurologist?

Please let us know, since so many of us are also taking these same drugs.

Best wishes for you.

El

I also wake up with headaches probably 3-4 weekly. Usually take 2 Tylenol when this happens.

Welcome, joyce.

You found an old thread. I'm not sure these people are still posting.

I'm new to RA so I'm just getting started on this crazy train. It seems like anything you take does have some danger, but then not taking it can be just as bad too.

I have fibromyalgia too, along with other lovely things. I hope to see more from you.

Hi Rob any update on your latest results from the brain lesions?