A Remicade side effect?

[atame064]

I had been struggling for the past five years with many symptoms ranging from stiff and swolen  joints, muscle pain, twitching muscles, sever fatigue to mention a few (some days worse that others). On june '06 I was diagnosed with RA. I was immidiately put on Methotrexate (with very little responce). On Febuary '07 on Remicade infussons. Due to allergic reactions to the Remicade, I would get a shot of Soliumedrol with every infussions (once evey 4 weeks).  In October I began to get lost in my house not knowing where I was (for a few minutes), looking at a STOP sign while driving and not reacting to it (it ment nothing to me), forgetting how to count and when speaking, not being able to find the wright words (words used on a daily basis).           I am a 34 yr old woman, VERY SCARY!!!!!

I was sent for an MRI which came back abnormal. "Several small foci of nonspecific T2 signal. Abnormality in the deep and subcortical white matter of the cerebral hemispheres, billaterlally.

IMPRESSION: nonspecific foci of cerebral hemispheric white matter signal abnormaility, which may represent a chonic ischemic change associated with migrane headaches.

What else can this be??? I did not suffer from headaches at all!  Could it be Lupus, stoke or MS?? I must add that all of my blood work has been normal for RA and Lupus, only one Positive RA & Lupus panel, negative from then on but sings of cartilage degeneration on X-ray.

I got referred to a Neurologist, and currently scheduled for an MRA.  WHAT TO DO AND WHAT TO EXPECT?

[Caroline123]

No I didn't an MRI... I really didn't have neurological symptoms.. although now i think about it.. for several years I would have night tremors or some sort of seizures.. i could feel it in my sleep and it would wake me up and i'd catch the end of it.. weird.
I'm good now.. although i do have some sjogrens symptoms.. always something! :)  happy holidays

[atame064]

Did you get an MRI and If so did it come back abnormal? One other question, how long does Remicade stay in your system?

I which you the best of luck also and thank you for the info.

[Caroline123]

Hi there... I was on Remicade for a couple of years.. Over time, it stopped working and I went downhill.. tendons started tearing... ligaments started going.. no energy, ect.  One day the RA was in a full flare.. i couldn't walk, bend my knees.. and felt like hell!!  I was diagnosed with drug induced lupus from the Remicade.. They had to write a report and send it off to the FDA.  I have come to believe that anything that would mess with the inner workings of your immune system will most likely have significant reprocussions.  I went on prednisone for awhile and started with a natural homoeopathic treatment plan.  It was a long road but within 2 years I was off the prednisone and haven't had any significant problems since.  I was qualified as a moderate to severe RA patient!
By the end of the Remicade involvement I had permanent joint damage particularly on my hands, where I wear splints.  I have also come to believe that RA is brought about by a strong sense of grief or loss of control.... okay hang in there and best of luck to you!

[NewLeaf]

Yes, it is an infusion. You do it two weeks apart basically every 6 months. So if you started on Jan 1 then the second infusion would be on the 14th and then no more for 6 months. It has helped my RA which generally has a mind of it's own and won't listen to most drugs (joke) and for Rituxan it pays attention!  It was originally used for non Hodgkins type lymphoma and has been on the market for many years and they figured out it works on RA about 5 years ago and they only recently approved it for RA on the past year or two. It has practically zero side effects and way less infection rates than the Enbrel types, although, I do have persistent ear infections ;-(  Most people don't. My sister is also on it and has been fine.
Hope this helps. OH - Rituxan also takes about 6 months to take effect too but when it does you really can notice the difference.

[atame064]

  Do you know anything about Orencia infussions?  I was switched to it about a month ago. It will take 6 months for it to make an effect on my RA.

I have not heared about Rituxan. Is it an infussion?


Thank You so very much for the information.

[NewLeaf]

Not that I am aware of. What I do know is that these TNF inhibitor biological drugs can, over time, cause RA and your body to get crafty and do what it wants to do no mater what and cause inflamation in a different way - been there done that. I can no londer take them because they trashed my immune system and i was so sick for 3 years because i could no longer take the drugs and my RA came back with a vengeance but i also had continual really serious infections of all kinds thst nearly killed me because of the trashed immune system, kind of like aids. I have now been on Rituxan with reasonable results but elevated infection rates. Have a cronic ear infection that will not go away, having to postpone my next infusion until it hopefully does go away after the umpteenth antibiotic treatment. Don't get alarmed, this is not common.

Really hope you can figure it out soon...I know how frustrating it can be as well as painful. Keep trying to figure it out and be persistent with your doctors. Stay strong.

[atame064]

Yes, I have been tested and results have been negative, but once, according to the dr. it was due to a B12 deficiency. I was put on B12 shots once a month. After this, my lab work was normal (for the past 4 years).

Is it true that Remicade can induse Lupus ?


Thank You,

atame064

[NewLeaf]

Have you been tested for lupus? Lupus can involve the brain, not just other soft tissues. There is a simple, specific blood test for lupus. If it were a side effect of the Remicaid it would be very unusual.