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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
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
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 12:28PMTo: 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.
Related discussions
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Relapsing Remitting vs Progressive MS (9 replies):Quix: I'll echo everybody else's comments that I'm sorry...[more]
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
I can't help but wonder why it isn't being used more in people with classic signs and symptoms, but non-diagnostic MRI's. We know that a huge number of the lesions in MS are still not being picked up by current MRI machines. The newer T3 machines are better, but aren't yet widely in use. Yes, I am newly diagnosed with MS. I went from 0 spinal lesions to 7 just in switching to the T3 machine.
Quix
Am also getting sharp pains up and down spine. Went to ER and had x-rays of spine. All they told me was, I had some arthritis in lower spine. No other explanations. Is it possible that pain in arm and thigh (can feel nots in them sometimes), isn't MS related? Could it be a pinched nerve or maybe cancer? The drs I've seen aren't giving me much advice.
Also was wondering , how helpful are copaxone and other injectables? I am not on any currently, but am considering copaxone, because insurance pays most. Would only have to pay co-pay. I've heard there is alternative meds, but that my insurance and most insurance doesn't cover them. I REALLY hate needles, but would do it if had to. Any suggestions or advice would be helpful. Thanks.
I've continued to look at the use of the anti-myelin antibodies and have concluded that, while they are commercially available, they have not been shown to be statisitically helpful in in diagnosing MS. Which is why the MS specialists aren't including them in the MS diagnostic protocols. Now, that does not mean that in any "individual" case that they won't bring some more information to the table. Your case is so complex and worrisome that I would look for and use all pieces of info available. Here is the New England Journal of Medicine article from Jan 2007 that found no association between the anti-mylelin antibodies and progression to MS. It doesn't really apply to your case.
http://content.nejm.org/cgi/content/abstract/356/4/371
I am a former pediatrician who was disabled in 2001 by Autoimmune Inner Ear Disease with severe, intractable vertigo. At that time there was very good evidence that my problem was with the peripheral vestibular system, not the CNS. We have not found anything that treats the vertigo effectively. About 2 and a half years ago I developed right leg weakness and spasticity, severe fatigue and heat intolerance, then incontinence, and then weakness and spasticity of my right arm. My neurologist ignored a classic brain lesion and basically accused me of faking my symptoms (spasticity??) So I found an MS specialist who confirmed the diagnosis last March. I am on Avonex and it's too early to know if it will help.
I miss being useful and practicing medicine, so I hang around the forums answering questions when I think I can help. I would very much like to find out what happens with you and what you/they decide to do. Mostly I hang out over on the MS Forum here on MedHelp trying to help people navigate the diagnostic maze.
Quix
I have seen Remicade mentioned in a couple of medical articles for CAUSING Multiple Sclerosis-like symptoms. The problem is that MS responds to things like Interferon. Interferon "modulates" a crtical part of the immune system, that part which is felt to be near the source of the problem in the demyelination procress. Interferon is actually a byproduct of the action of the immune system. It does not suppress the immune system, contrary to what a lot of people seem to believe. I question your doc considering it.
Remicade is a direct supressant of the immune system, basically shutting it down. MS apparently needs at least a partially functionl immune system to stay in check.
Like I said to you in another post, if your disease responds well to IVIG, then could you possibley have CIDP instead of MS. Do you know if you have decreased knee and ankle reflexes or normal or hyperactive?
Quix
I bring it up, only because it mimics other diseases like MS in symptoms, but is treatable. Quix
Autonomic neuropathy (which can cause gastrointestinal abnormalities, like diarrhea or constipation), cardiac and blood pressure abnormalities and problems with vascular instability and temperature instability can be SEEN IN CIDP. In fact, autonomic neuropathy is a subset of CIDP. People who deal with CIDP feel that anyone in whom this Dx is even considered should be given a course of therapy, eg. IVIG or plasmapheresis. The thinking is that CIDP in most of it's forms responds very well to treatment and the other options (MS) don't. Again, typically the spinal fluid will have an elevated protein. There are also a couple serum antibody markers for some of the variants.
Again, I am not a neurologist and actually can barely understand the genetics immunological and biochemical discussions of CIDP. But, it seems to me that I see quite a bit of symptomatology here that fits with CIDP and may be being missed.
As I understand it, hyperactive reflexes would not fit CIDP (I don't know if this is hard and fast). The heat intolerance and also generalized fatigue is frequent in CIDP. I recently looked this up. There are many variants of CIDP and many of them include paresthesias (sensory CIDP). So Yes, the urinary, constipation, heat intolerance and "fire ants" could fit CIDP also.
About the Ca channel finding - I am totally ignorant on this topic. sorry
If either of you want to contact me you can do so at my nickname neuroquix and I use the gmaildotcom program.
Dittle, I realize that you have AS and that may make an LP difficult. I have garden variety osteo (not even in the same category!) but they did my LP under fluoroscopy guidance, working painlessly around the osteophytes and my LP was slow, but a total breeze. Would a repeat LP give you any more info? From your descriptions I can't believe they don't think you have MS. On MRI scarred lesions don't go away, but may eventually leave "black holes." Are they saying that they think you have a vasculitis causing the constant appeareance of new lesions? And is that characteristic of AS???????
I remain worried by your statement that the rheumatologist is willing to use Remicade as the lesions "may not" be demyelinating. But, what if they are? Would IVIG or plasmaphoresis be beneficial for any of your illnesses, IBS or AS?
Quix
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.