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Neurology (Expert Forum)
demyelinating brain lesions and starting Remicade treatment
Answered by
Joanna Fong, MD - Stroke/NICU, multiple sclerosis, sleep, EEG, General Neurology
Cleveland Clinic
Cleveland - OH
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demyelinating brain lesions and starting Remicade treatment
by dittledittle, Jul 02, 2007 12:00AM
5 yrs. diagnosed with demyelinating brain lesions. 51 yr. old female diagnosed Multiple Sclerosis and received treatment with Betaseron, Solumedrol, Novantrone. Treatment hasn't helped. Brain lesions do not go away and I get a few new lesions each year. So I keep accumulating active brain lesions. MRI -Multiple small foci of bright FLAIR in the subcortical white matter of both hemispheres in relatively symmetric distribution. I am also diagnosed with Ankylosing Spondylitis and Ulcerative Colitis. Need Remicade treatment but was told by one rheumatologist he wouldn't do it because of brain lesions-said I could die from Remicade activating further brain lesions. Saw another rheumatologist and she said yes to Remicade based on the brain lesions may not be demyelinating. My symptoms are balance difficulties, Optic Neuritis, Uthoff's phenomenon, both legs w/weakness, muscle spasms, memory loss, arthritis of spine-hips-hands-feet, hearing loss. Waiting on a blood test for Myelin Basic Protein & Myelin Oligodendrocyte Glycoprotein. If this test comes out negative would it be safe to take Remicade? Have had blood tests several times for Lupus, Sarcoidosis, Lyme,etc. All negative but HLA-B27 positive. What should I do. Thank you.
Doctor's Answer
by Joanna Fong, MD, Oct 14, 2007 12:28PM
, Oct 14, 2007 12:28PM
To: dittledittle
Your symptoms listed above are typical of multiple sclerosis. However, without a full neurological examination and MRI films to review, it is difficult to answer your concerns with 100% certainty. Here are the thoughts:
0) Multiple sclerosis (MS) is an autoimmune inflammatory demyelinating disease of the central nervous system (CNS).
1) Multiple sclerosis has many different types. Some are progressive, some are relapsing-remitting course. If your symptoms have been progressively worsen or with no improvements, this is likely a primary progressive. Primary progressive MS (PPMS) represents only about 10 percent of cases at onset and is characterized by a steady decline in function from onset with no acute attacks. Another progressive types are: "Progressive relapsing" — Progressive/relapsing MS (PRMS) begins with a progressive course, with occasional attacks superimposed upon the steadily progressive course. "Secondary progressive" — Secondary progressive MS (SPMS) begins as relapsing-remitting disease (RRMS), but it later changes so that the course becomes characterized by a steady deterioration in function, unrelated to acute attacks. Typically, the attack rate is also reduced when the secondary progressive stage is reached. This type of MS, which ultimately develops in approximately 80 percent of RRMS patients, causes the greatest amount of neurologic disability.
2) Number of brain lesions usually correlates with progression of disease (i.e. more symptoms).
3) I understand that you had tried Betaseron, Solumedrol, Novantrone. Treatment directed at the progressive phase of MS is typically more difficult than treatment of relapsing forms of MS. Immunosuppressive therapies such as total lymphoid radiation (TLI), cyclosporine, methotrexate, 2-chlorodeoxyadenosine (2-CdA), cyclophosphamide, mitoxantrone, azathioprine, interferon, steroids, intravenous immune globulin (IVIG), and plasma exchange have shown at least some positive clinical effects in progressive disease.
4) However, all of these nonspecific immunosuppressants suffer from the same basic defect; they may temporarily halt a rapidly progressive downhill course, but it is difficult or dangerous to employ them for more than a few months to a year or two. Thus, since MS is an illness of decades, not months, immunosuppressive therapy is only a temporary solution at best.
5) It's a good idea to see a MS specialist. We have Mellen Center here in the Cleveland Clinic (Cleveland, OH). They'll be able to help you out more.
6) Physical therapy is very important, especially you have weakness.
7) Remicade is a Tumor Necrosis Factor (TNF) Blocking Agent - a disease modifying agent/immunosuppressive agent. It is sometimes used in crohn's disease and Ankylosing spondylitis. There are case reports of demyelinating disease of the central nervous system linked to anti-tumor necrosis factor alpha therapy such as Remicade. It is also in the warning label for Remicade: "Warning: Concerns related to adverse effects: Autoimmune disorder: Positive antinuclear antibody titers have been detected in patients (with negative baselines). Rare cases of autoimmune disorder, including lupus-like syndrome, have been reported; monitor and discontinue if symptoms develop."
I hope they're helpful and answer some of your concerns. It is still a good idea to see a MS specialist.
Good luck.
0) Multiple sclerosis (MS) is an autoimmune inflammatory demyelinating disease of the central nervous system (CNS).
1) Multiple sclerosis has many different types. Some are progressive, some are relapsing-remitting course. If your symptoms have been progressively worsen or with no improvements, this is likely a primary progressive. Primary progressive MS (PPMS) represents only about 10 percent of cases at onset and is characterized by a steady decline in function from onset with no acute attacks. Another progressive types are: "Progressive relapsing" — Progressive/relapsing MS (PRMS) begins with a progressive course, with occasional attacks superimposed upon the steadily progressive course. "Secondary progressive" — Secondary progressive MS (SPMS) begins as relapsing-remitting disease (RRMS), but it later changes so that the course becomes characterized by a steady deterioration in function, unrelated to acute attacks. Typically, the attack rate is also reduced when the secondary progressive stage is reached. This type of MS, which ultimately develops in approximately 80 percent of RRMS patients, causes the greatest amount of neurologic disability.
2) Number of brain lesions usually correlates with progression of disease (i.e. more symptoms).
3) I understand that you had tried Betaseron, Solumedrol, Novantrone. Treatment directed at the progressive phase of MS is typically more difficult than treatment of relapsing forms of MS. Immunosuppressive therapies such as total lymphoid radiation (TLI), cyclosporine, methotrexate, 2-chlorodeoxyadenosine (2-CdA), cyclophosphamide, mitoxantrone, azathioprine, interferon, steroids, intravenous immune globulin (IVIG), and plasma exchange have shown at least some positive clinical effects in progressive disease.
4) However, all of these nonspecific immunosuppressants suffer from the same basic defect; they may temporarily halt a rapidly progressive downhill course, but it is difficult or dangerous to employ them for more than a few months to a year or two. Thus, since MS is an illness of decades, not months, immunosuppressive therapy is only a temporary solution at best.
5) It's a good idea to see a MS specialist. We have Mellen Center here in the Cleveland Clinic (Cleveland, OH). They'll be able to help you out more.
6) Physical therapy is very important, especially you have weakness.
7) Remicade is a Tumor Necrosis Factor (TNF) Blocking Agent - a disease modifying agent/immunosuppressive agent. It is sometimes used in crohn's disease and Ankylosing spondylitis. There are case reports of demyelinating disease of the central nervous system linked to anti-tumor necrosis factor alpha therapy such as Remicade. It is also in the warning label for Remicade: "Warning: Concerns related to adverse effects: Autoimmune disorder: Positive antinuclear antibody titers have been detected in patients (with negative baselines). Rare cases of autoimmune disorder, including lupus-like syndrome, have been reported; monitor and discontinue if symptoms develop."
I hope they're helpful and answer some of your concerns. It is still a good idea to see a MS specialist.
Good luck.
You need to talk with a third specialist about the true danger of taking the Remicade if, indeed, you do have MS. That's why you're posting here of course, but the neuro here is almost a full month behind in answering. Once you know that risk, then you have to weigh it against not treating the other two diseases and what further disability they will inflict. If the risk is potentially fatal with Remicade, then this is a situation where I would definitely seek a third opinion from the best source I could get access to.
I think you need a team conference of Neurology, Immunology, and Rheumatology at a major teaching center or major university medical center to discuss all of the options. This is far too complex for you to sort it out by going from one doctor to another. (I don't know if that is what your are doing). I am a physician and, if it were me, I would demand such a team approach.
I have another question if you would be so kind as to answer it. I was under the impression that using the the anti-MOG and anti-MBP antibody tests were still in research. Are they performing these on your blood? Are they doing it especially for you or are these tests now available for use in diagnosing others? Where are you having the tests done? I was assuming that you had not had a lumbar puncture because of the AS. Thank you, Quix