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Remicade demylination (REPLY)
Dear Dr. Quix,
I really appreciate your concern. thanx alot. I stopped remicade last February, thats 9 months ago..My symptoms appeared last march (numbness in my hands and legs)..which is one month after i stopped the remicade. I had an MRI beginning of April, and thats when my neurologist found the demylination in the brain and cervical vertebra. I wasnt diagnosed as MS, the doctor was hoping that its just a side effect of my remicade treatment. i repeated my MRI 3 months later, thats beginning of july, after 2 courses of methylprednisolone (each course was 5days 1000mgIV each day). The lesions were still present but were non enhancing! One week ago i started to fell numbness only in my hands. I was told that if these lesions were just a side effect of my remicade injections, i will have relapses of these symptoms several times until they finally disappear at once! Is that true? should i be worried it could be really MS? Is there any furthers tests i should take? and do you advice me to take a course of methylprednisolone before my symptoms get worse?
Thanx in advance.
Dr.Tariq Alzoubi.
I really appreciate your concern. thanx alot. I stopped remicade last February, thats 9 months ago..My symptoms appeared last march (numbness in my hands and legs)..which is one month after i stopped the remicade. I had an MRI beginning of April, and thats when my neurologist found the demylination in the brain and cervical vertebra. I wasnt diagnosed as MS, the doctor was hoping that its just a side effect of my remicade treatment. i repeated my MRI 3 months later, thats beginning of july, after 2 courses of methylprednisolone (each course was 5days 1000mgIV each day). The lesions were still present but were non enhancing! One week ago i started to fell numbness only in my hands. I was told that if these lesions were just a side effect of my remicade injections, i will have relapses of these symptoms several times until they finally disappear at once! Is that true? should i be worried it could be really MS? Is there any furthers tests i should take? and do you advice me to take a course of methylprednisolone before my symptoms get worse?
Thanx in advance.
Dr.Tariq Alzoubi.
hi i have just read your post, i myself was on reacide for 5 years this year in march i woke up with numbness had an mri done a lesion was discovered at c3 area had 5 days of steroids stopped remicide imediately then in july more numbness i couldnt feel my legs at all for 20mins when i woke up 1 morning then the feeling came back another mri discovered another lesion at t11 more 5 days steroids lumbar puncture and diagnosis of ms, before i went on remacide i had to sign a paper in this it stated can bring on ms i was on remacide for arthritis my hands and feet are deformed with arthritis the remicide was fantastic while i was on it i had no pain when i stopped due to numbness the pain was terrible i am now on a med called arava / leflunomide until my nuero and rematologist can agree on a med doing ok coping well not the end of the world, but there is evidence of remicide causing demylentation and brimging on ms, can i ask why you were on remicide for and how long you took it all the best hopefully you wont have anymore lesions.
I have been reading all I can about the relationship between the TNF-blocking meds and MS. I could not find any very recent articles. This is all I have been able to find:
The association between episodes of demyelination and use of the Anti-TNF drugs was noticed as early as 1991. None of the reports have had large numbers of patients. Many of the autoimmune diseases appear to have TNF (Tumor Necrosing Factor) as a part of the disease process, so it was felt that these drugs could be of use in them. One of the earliest was RA and MS. But, while TNF-Blockers clearly could benefit Rheumatoid Arthritis, they made MS worse!
Not much is known about exactly what the association is for causing demyelination. Typically when a patient on a TNF Blocker suffers an episode of demyelination the drug is removed and the episode generally resolves. One article described continuing the drug in 2 patients and their episodes resolved, but most articles concluded that the drug should be stopped.
There have been several patients, though that went on to develop Definite MS after stopping the Anit-TNF drug.
No one knows, however, whether the Anti-TNF drug actually caused the MS or whether it "unmasked" a latent disease. That is, maybe the people had MS that just hadn't showed up yet. I think the numbers of this unfortunate people have been too small to know whether the inital drug "caused" MS in some people or whether it just made it show up.
The current recommendation seems to be to get a baseline MRI before starting the TNF blocking drug so that more information can be obtained and so that people who already have suggestive lesions would not be candidates for the drug without very clear informed consent.
I haven't answered your main question and I can not. Since you had both episodes of neurologic symptoms AFTER stopping the Remicade, it is hard to say that this is still the side effects of the drug and not the beginning of a demyelinating disorder such as MS.
Now, The second MRI showed that the lesion enhancement had disappeared. This would be expected. Enhancement is felt to last only a few weeks - 6 at the most. So three months later you would expect that the earlier enhancement would have resolved.
And IV steroids may also quickly stop the active inflammation (which causes the enhancement).
I wish I could tell you when the numbness will disappear. In the context of MS, none one can predict how long a relapse will continue. It is this unpredictability that makes MS so difficult to live with. I am not saying that you have MS, just that it is a possiblility.
This is all I really know about the relationship between Remicade and MS. I wish I could be of more help.
Quix, MD
The association between episodes of demyelination and use of the Anti-TNF drugs was noticed as early as 1991. None of the reports have had large numbers of patients. Many of the autoimmune diseases appear to have TNF (Tumor Necrosing Factor) as a part of the disease process, so it was felt that these drugs could be of use in them. One of the earliest was RA and MS. But, while TNF-Blockers clearly could benefit Rheumatoid Arthritis, they made MS worse!
Not much is known about exactly what the association is for causing demyelination. Typically when a patient on a TNF Blocker suffers an episode of demyelination the drug is removed and the episode generally resolves. One article described continuing the drug in 2 patients and their episodes resolved, but most articles concluded that the drug should be stopped.
There have been several patients, though that went on to develop Definite MS after stopping the Anit-TNF drug.
No one knows, however, whether the Anti-TNF drug actually caused the MS or whether it "unmasked" a latent disease. That is, maybe the people had MS that just hadn't showed up yet. I think the numbers of this unfortunate people have been too small to know whether the inital drug "caused" MS in some people or whether it just made it show up.
The current recommendation seems to be to get a baseline MRI before starting the TNF blocking drug so that more information can be obtained and so that people who already have suggestive lesions would not be candidates for the drug without very clear informed consent.
I haven't answered your main question and I can not. Since you had both episodes of neurologic symptoms AFTER stopping the Remicade, it is hard to say that this is still the side effects of the drug and not the beginning of a demyelinating disorder such as MS.
Now, The second MRI showed that the lesion enhancement had disappeared. This would be expected. Enhancement is felt to last only a few weeks - 6 at the most. So three months later you would expect that the earlier enhancement would have resolved.
And IV steroids may also quickly stop the active inflammation (which causes the enhancement).
I wish I could tell you when the numbness will disappear. In the context of MS, none one can predict how long a relapse will continue. It is this unpredictability that makes MS so difficult to live with. I am not saying that you have MS, just that it is a possiblility.
This is all I really know about the relationship between Remicade and MS. I wish I could be of more help.
Quix, MD
Hi Dr. Tariqo,
I'm sure Quix will be along later and able to be of more help to you. I stopped to read your post because I know people who are on Remicade and have never heard the connection of Remicade causing demyelination. That would be a very scarey side effect of this potent medicine and I would think it would not be approved for use if that were the case.
I'm sorry that you are having such problems - hopefully you will recover your strength very soon. I'm not sure how often you can do the IV steroids, but do know that there can be serious side effects from using them too often and too much, so you want to consider that.
Out of my own curiousity, were you born and raised in the Middle East? The demographics for MS in that area of the world are very low, thanks to the high doses of sunlight you get, and you are the second doctor this week looking for answers. The earlier one was a doctor needing help with a woman patient in Egypt, which also received plenty of daylight. MS is more prevalent in those areas that have low sunlight- like Canada, Norway, Australia, Great Britain, the northern states in the US.
Hang in there and hopefully Quix will see you message and respond to your questions.
feel better,
Lulu
I'm sure Quix will be along later and able to be of more help to you. I stopped to read your post because I know people who are on Remicade and have never heard the connection of Remicade causing demyelination. That would be a very scarey side effect of this potent medicine and I would think it would not be approved for use if that were the case.
I'm sorry that you are having such problems - hopefully you will recover your strength very soon. I'm not sure how often you can do the IV steroids, but do know that there can be serious side effects from using them too often and too much, so you want to consider that.
Out of my own curiousity, were you born and raised in the Middle East? The demographics for MS in that area of the world are very low, thanks to the high doses of sunlight you get, and you are the second doctor this week looking for answers. The earlier one was a doctor needing help with a woman patient in Egypt, which also received plenty of daylight. MS is more prevalent in those areas that have low sunlight- like Canada, Norway, Australia, Great Britain, the northern states in the US.
Hang in there and hopefully Quix will see you message and respond to your questions.
feel better,
Lulu
1 Comments
I am a nurse and now have MS after taking remicade. I was wondering how you all were doing?
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