From alt.support.mult-sclerosis Fri Oct 18 14:32:27 1996 From: snowbl@aol.com (SnowBL) Date: 16 Oct 1996 15:03:07 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Betaseron Good News Status: RO I'm disapointed with people who discourage the use of MS drugs like Betaseron without prefacing that each individual is different and the outcomes are not all the same. I've taken Betaseron SUCCESSFULLY for 2 1/2 years with very little side effects, struck a complete remission and my recent MRI shows NO NEW plaques. As a matter of fact, it showed rejuventated meylin. My nuero gave me the best advice on taking the drug and I will share this with you. Start off with very small doses. Do not start with the entire 1cc injection intially. Just like an allergy patient slowly becomes desesitized to the allergen compound in their syringe, so must we. It took me 4 months to work up to the entire dose, but I never became sick, my injection sites were minimal and I feel GREAT. I knew a little Betaseron was better than no Betaseron until I could work up to the full dose. With the release of Avonex, I know we all ahve two choices in Interferon therapy. Please just remember you do have options available and don't let someone's horror story or a cranky nuero impede your right to try something that may work for you. I've been so happy on Betaseron. Three years ago when I was diagnosed, I was paralyzed from the waist down, in the wheelchair and partially blind with optic nuritis. TODAY I just finished 4 miles on the treadmill. I'm so thankful for Betaseron and the impact it has had on my life and I appreciate the efforts of the scientific community. I'll stay positive and know I've made the best choice for me. Best wishes and may you stay as healthy as possible. Thanks, Brenda Snow SnowBL@aol.com From alt.support.mult-sclerosis Wed Oct 23 18:44:46 1996 From: Jackie Ferguson Date: Mon, 21 Oct 1996 20:57:02 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: cladribine Status: RO Nora Holtrust wrote: > > Hi everybody, > > I read a little while ago in de newsgroup a lot of new research. I have > myself cp ms and there is not much research for our type of ms. I read > however about cladribine, that had been tested for cp ms. Here, in > Holland, we are most of the time a few years behind the USA. So, I was > wondering, does anybody in the States know something about this drug? > Doe you have any personal experience with it? > If anybody can help me with this, my personal email nr. is > nora.holtrust@tip.nl > > Thank you in advance > > Nora ************************************************************************ Nora, RE: Your questions about cladribine. I took cladribine from August 1995 though February 1996. Cladribine (also called 2CdA [adenochloradeonosine) is a powerful drug which is approved by the Food & Drug Administration for hairy cell leukemia and certain other types of cancer). So it is already on the market. The drug works by actually inhibiting the growth of certain white blood cells -- T4 & T8 lymphocytes -- (which are implicated in the demyelinating process of MS). So a pilot study was done in La Jolla, CA. on a small number of CPMS (chronic progressive MS) patients. Most of those who took the drug stabilized ... some even improved. Those who took placebos either got worse or didn't deteriorate further. A multi-center trial is underway in the US (and I think Canada) with a far larger number of people. It's a 2 or 3 year study. Being a nurse, I realized the drug was available ... the trick was to find a neurologist who would order it (I was deteriorating and that made me a good candidate for the drug!) I took the drug IV in my doctors office 5 days a week, once a month, for a total of 6 months. I had 30 doses in all. I didn't feel any side effects ... no nausea, no vomiting, no hair loss ... I felt fine throughout the treatments. It is a high powered drug, and potentially it can suppress the immune system so much that it is "life-threatenning". But they monitor your blood counts carefully, and delayed treatment on a few occasions because my counts were too low. The doctors and I think it arrested my disease at present. I also am exercising daily to strengthen & stretch muscles. So overall, I'm much improved... my gait is better (I was pretty much in a wheelchair)... I'm glad I did it. But there are no guarantees ... not even a definitive study that the drug actually works in MS! But I do believe in medical miracles ... but that involves a willingness to take risks ... I had to sign a consent that said that they had absolutely no idea of the long term risks of cladribine. I reasoned it, yes ... but I knew where I was heading and I was willing to assume the risk versus possible benefit. The drug is also VERY expensive ... something like $500.00 per dose! Also, there is additional work being done for people with CPMS. The Avonex drug company is testing it on CPMS pts. (It was FDA approved for relapsing/remitting MS.) I hope I answered your questions. There are many people, not just in the USA, who have taken cladribine as I did. How are you doing? If I can provide more information, please let me know. 2 Jackie Ferguson, RN, MS jackferg@worldnet.att.net From alt.support.mult-sclerosis Fri Oct 25 11:35:58 1996 From: gplarry@airmail.net (Larry Chrislip) Date: Thu, 24 Oct 1996 00:36:03 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: update on Bertel Status: RO B Stenius & M Martin wrote: >Hello all, I am writing for Bertel because he is too tired himself >and wants to answer all those who have remembered him either >on the list or privately. My name is Larry Chrislip, I have had TN for past last 10 years. I received this information just this week. FYI . Your story is the extreme case of a patient that we read about in the neurosurgical textbooks. Surgical treatment of long standing trigeminal neuralgia can be successful. It involves insinuating a small cushion between the nerve as it exits the brain and any blood vessels that might be pressing upon it. Recent developments in the use of the Gamma Knife may be a viable alternative for the future. Short term results are very encouraging. It is performed on an outpatient basis. It uses a focussed point of radiation to disrupt the abnormal electrical circuit within the nerve which may be the cause of the face pain. I am part of a group of neurosurgeons that is participating in a Gamma Knife program. There is GK unit in Houston, I believe. If you wish for more information, mail us. > From alt.support.mult-sclerosis Fri Oct 25 17:03:38 1996 From: deebee Date: Wed, 23 Oct 1996 14:16:09 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: MS and Lyme Disease Status: RO >In alt.support.mult-sclerosis, Jim wrote: >Does anyone know of the research of a Dr. Joseph which implies a link >between the two diseases?? Apparently all 40 of his MS test subjects >responded to antibiotic therapy...is this bull or is there info out >there that is new (to me maybe)? >Rgds JimW I may be all wet with this reply since I've never heard of Dr. Joseph. However, when my daughter was dx'd w/MS 5 yrs. ago, she was also dx'd w/Lyme. Under normal circumstances, she would not have been treated for the Lyme because her titre was only slightly elevated, something apparently common to about 60% of the population in our area (Long Island). Since neurological symptoms were involved and since optic neuritis (her sx) can also be the result of Lyme, they wanted to eliminate the possibility of the Lyme involvement, so Jennie was treated aggressively with antibiotics. She received 21 days of Rocephin, IV to treat the Lyme and oral steroids to treat the ON symptoms. She has since had some major exacerbations ranging from ON to severe vertigo to Bell's Palsey. Don't know what antibiotic therapy Dr. Joseph uses, but I *do* know that Jen's did nothing for her MS. Take care. P. -+++- -+++- -+++- -+++- -+++- -+++- PamY Some days you're the pigeon and some days you're the statue. :-) -+++- -+++- -+++- -+++- -+++- -+++- From alt.support.mult-sclerosis Tue Oct 29 11:39:07 1996 From: dcwong@unixg.ubc.ca (Donald Chun Kit Wong) Date: 27 Oct 1996 10:18:12 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Nitric Oxide and BBB Status: RO Nitric oxide is made by neurons, white blood cells, endothelial cells, to name a few. One of the mechanism of its action involves its interaction with guanylyl cyclase to increase cGMP formation. It is known that such cyclic nucleotides can act in endothelial cells to increase the barrier forming function and decrease the permeability of the barriers. However, this has mainly been studied with extracerebral endothelial cells in vitro. Though some in vivo studies with animals (mice, rats, etc.) do suggest that administration of nitric oxide is therapeutic for some experimentally induced conditions such as cerebral ischemia and reperfusion (stroke). How this applies to humans or to MS is under investigation. Donald Wong, Ph.D. Neuroscience and Pathology, University of British Columbia Vancouver, Canada From alt.support.mult-sclerosis Fri Nov 1 13:34:22 1996 From: jdalton@ix.netcom.com(jack dalton) Date: 30 Oct 1996 01:56:29 GMT Newsgroups: alt.support.mult-sclerosis Subject: Gamma Interferon Status: RO I just received my latest copy of my Tufts University, Diet & Nutrition Letter(Vol 14, no. 9, November 1996) pg 3. "Other pieces of research point to a potential link between yogert and an improved immune system. At the University of California, people who ate 2 cups of bacteria-containing yogurt each day for several months produced more of a substance called gamma interferon than eaters of yogert in which the bacteria had been killed. Gamma interferon is protein that helps the white blood cells of the immune system fight disease." It appears that this additional gamma interferon is not desirable for people who have MS. The literature clearly shows that Gamma Interferon worsens the MS condition and in fact taking Beta Interferon(1a or 1b) causes that Gamma Interferon to be come dormant. Additional comments and/or research on this subject is requested. The implications of this are quite clear. Find out what causes the human body to produce more gamma interferon, and then stop eating it! From alt.support.mult-sclerosis Sun Nov 3 19:45:58 1996 From: B Stenius & M Martin Date: Wed, 30 Oct 1996 20:37:59 +0200 Newsgroups: alt.support.mult-sclerosis Subject: Back from op, op OK Status: RO Hi, my TN operation, which I and Mona have written quite a few msgs about, was performed yesterday, successfully. Now I am at home. This is to say thank you from myself and Mona to all those who supported us. Believe me, I could feel that support coming. Is that an odd thing to say? I think not, but I admit there might be more apt ways of talking about this. It would mean finding a language for a kind of physical impact, of material solidity of things which have neither. A language for the truly awe-inspiring remote-effects of warm thoughts, good wishes, and prayers. And yes, hugs from people I've met only in this electronic medium. God knows, I needed them. In humbleness, and with respect, I took what I was given. - Only a small part of people with trigeminal neuralgia have MS, but many MS'ers have it, probably as one of the strange symptoms of the disease. TN means an intense pain in the big facial nerve, thought of as triplets, gemini plus one, because it has three branches. You can have TN on either side of the face or on both, but if you have it one both sides you don't have a double-sided TN but two cases of TN. I had TN on the right side. TN, of course, is exhausting as such. Tegretol, the only drug which worked in my case, has tiredness as a by-effect. Also, Tegretol is self-defeating, and has to be taken in increasing doses to have any effect at all. I had passed the stage where the drug could help me. I was in real bad shape, not only because of TN and anti-TN but also because of an exarcerbation of my MS. Add anxiety and plain fear, you got the picture. The aim of my TN op was to block two branches (chiefly) of the TN by means of an electric current. As a result of the op I have no pain. The right side of my face is numb, which is what it should be. It is not pleasant, but if it where not for this numbness, then the neuralgia would be back. Basically, the numbness goes to show that the op was successful. The numbness will disappear partially. If too much wears off, I'll have a relapse, but then, it is always possible to have a new op. There are rewards and punishments to everything. If the alternatives are a Bertel screaming with TN and eating Tegretol and a Bertel who has no pain but a numbness in his face (you don't see the numbness) the choice is simple. I feel immense relief. I go back to a life as normal as an MS'er's life can be. Mona has been very upset. That, of course, is an understatement. Now she, too, could breathe of sigh of relief. That, of course, is a cliche. She is more than capable of putting it better, as no doubt she will. In gratitude Bertel in Helsinki From alt.support.mult-sclerosis Sat Nov 9 14:39:31 1996 From: Fran Kanterman Date: Sun, 3 Nov 1996 09:34:05 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Linomide Status: RO Tamar - It's nice to meet someone else who will be going through the linomide trial. It sounds like a very promising drug. Were you a participant in the small Israeli trial written up by Dr. Abramsky? I tried to send this to you privately rather than through the list because it will be long, and people on the list have objected to people sending long personal messages through the list, but that did not work. You can email me privately at withak@erols.com if you would like more information. I think the trial I am in is the one you are thinking about. There are about 900 people at 30 study centers in this trial - about 30 people in the trial at the center I go to. The trial I am in is for secondary progressive ms. I do not know all of the selection criteria, but I know you had to start out with relapsing/remitting ms and then become secondary progressive. Also, you have to be within a certain range on the disability score test - I don't know exactly what the range is, but my score is 5.5 To start the trial you have a physical exam from two doctors, an EKG, blood tests, and a long MRI. The results of these tests are reviewed, and then sometime within the next 30 to 60 days you start the trial if the tests came out OK. In my case I had a slight glitch - something in my blood test showed an elevated reading that can be associated with lupus. So I had to go to a rheumatologist who cleared me for the test by confirming that I do not have lupus and that the elevated reading was due to some medications I take. Once you are finally accepted into the trial, you have another MRI and then start the pills. There are numerous MRIs throughout the trial. The trial lasts for three years. Three out of four study participants get the real drug, with three different levels of the drug being tested. So you have a 75% chance of getting the drug. I am not such an experienced Internet user but I have collected a lot of bookmarks to ms sites, which I will try to send you with another message if you will send me a private email address so I don't clog up the list. This is not the first study I have been in. I was in the Cop 1 study - I left that study in August 1995 because the drug was no longer working on me. Where do you live in Israel? I have been to Israel a few times and am thinking of another trip in April. Good luck getting onto the study. I have heard from one person that the trial at Georgetown University is very slow in getting started. When are things scheduled to start in Israel? Also, there was a report in the Jerusalem Post last May (or around that time) that said linomide might be approved in Israel within one or two years. Do you know anything about that? I would be glad to hear from you. Fran Kanterman From alt.support.mult-sclerosis Sat Nov 9 14:41:14 1996 From: Irwin Mortman Date: Tue, 5 Nov 1996 15:07:48 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Neurocrine Biosciences Status: RO ~From: "Michael Watkins" To: "Autoimmune Research" ~Subject: Company Financial Reports ~Date: Tue, 5 Nov 1996 14:27:27 EST ~Reply-to: Autoimmune_Research@ksg1.harvard.edu ~Sender: Maiser@ksg1.harvard.edu "In July, we reached another major corporate milestone and initiated clinical trials for our lead compound, NBI-5788, a novel therapeutic peptide vaccine for the treatment of multiple sclerosis (MS). This compound is being developed in collaboration with Ciba-Geigy as part of a strategic alliance formed in May of this year and is expected to enter Phase II clinical trials for the treatment of MS in 1997," added Lyons. Neurocrine Biosciences is a leading neuroimmunology company focused on the discovery and development of novel therapeutics to treat diseases and disorders of the central nervous and immune system such as anxiety, depression, Alzheimer's disease, obesity, and multiple sclerosis. Irwin Mortman Voice 513-891-7359 FAX 513-891-8186 E-Mail mortman@iac.net Cincinnati, OH From alt.support.mult-sclerosis Wed Nov 13 15:51:58 1996 From: longri@asterix.helix.net (Richard Long) Date: Tue, 12 Nov 1996 19:12:26 GMT Newsgroups: alt.support.mult-sclerosis Subject: Cladribine Status: RO I personally am having excellent results with sub-cutaneous Cladribine (Leustatin) injections. I think my cpMS had been progressing so quickly this spring that I would have been lying immobilein a nursing home by now if it wasn't for this drug. It hasn't cured my cpMS, or undone much damage to my ravaged body, but the drug has done what it is supposed to do. And that is just halt the MS. For how long, I don't really know. Hopefully a few years. And I also hope one of the new treatments will be available then. I'll bet when the trial results come out that they are positive. Thank God for the internet! And thank god for huge multinational drug companies. (Actually, I'm not too certain about that thank you.) My GP is so impressed he's arranging to send me to a rehabilitation centre. I've never heard of anyone with cpMS being rehabilitated before, usually it was assumed that nothing could be done,the disease would quickly erase any gains made through physiotherapy. Please remember that my views are HIGHLY subjective on what is happening to me. Regards, Richard Burnaby, B.C. Canada From alt.support.mult-sclerosis Wed Nov 20 19:39:56 1996 From: dxe@cassidy.sbi.com (Dan Ellsweig (Enterprise Management)) Date: 18 Nov 1996 18:20:24 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Solumedrol/beta interferons Status: RO Greetings Just wanted to pass my experiences with both solumedrol and beta i. My wife Jean (CPMS, DG'd 13 years) was put on a regimin of 2 weeks in hospital with IV solumedrol and 1 week oral (at home). The first year we did this the results were fantastic. For months afterward the results were still evident. The second year we did this the results were good but not as good as the first time. The third year we did this there was no improvment. We discontinued the solumedrol after this experience as the hospital stay was not worth the results. Jean was also one of the first lottery patients to get betaseron. At that time she was walking (with a cane or lofstrom (sp?) crutches. She took betaseron for over a year and the disease continued to progress. We saw no decrease in the rate of the progression so we discontinued after about a year and a half. These drugs may work for some of you but eventually reality will prevail and the disease will continue to progress Good luck Dan -- ****************************************************************************** Dan Ellsweig ** Salomon Inc. ** dellsweig@sbi.com ** Route 3 Rutherford, N.J. ** (201) 896-6162 ** Enterprise Management ** (800) 800-7759 PIN 221370 ****************************************************************************** From alt.support.mult-sclerosis Fri Nov 22 16:33:48 1996 From: Jack Schnapper Date: Mon, 18 Nov 1996 17:31:48 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Intro Status: RO Hi - I am kind-of new to this list. I say "kind-of" as I was a member several years ago and chose to leave as all was (and still is, btw) under control. But I have now decided to re-join to see what new things have been happening and to share the experiences of my wife's MS as well as those of our family. Robin (45) was diagnosed with R/R MS in 1982 and until about 3 years ago had only about 3 mild exacerbations. During a particularly prolonged event, during which her (then) neurologist was treating her with oral prednisone, it was my membership in this group that led me to the conclusion that she was not getting adequate treatment. The doc she was seeing was a local neuro and, I suppose, is fine for some things. But I wanted Robin to see someone who had a more MS-focused practice. As we live in the metro Washington DC area, I thought that this shouldn't be to difficult. Fortunately, through some investigation by knowledgeable people and the connections of others, Robin was able to get an appointment with Dr. Stanley Cohan, currently the Chairman of the Department of Neurology at Georgetown University Hospital. Dr. Cohan, after taking an extensive history and conducting a thorough examination, determined that the prior neuro was looking in the wrong place. The MRI's that Robin had been given were of the brain. Dr. Cohan decided, based on the fact that Robin's symptoms mostly manifested themselves in her extremities, that her MS was more centered around her spine. He ordered 2 MRIs for later that evening (one plain, the second with contrast) of her spine. The results confirmed his suspicions. In addition, after ordering the MRIs, he had his admin assistant order home-based Solumedrol (1000mg/day for 5 days) to begin the day after the exam. Everything went smoothly although the Solumedrol didn't seem to make any difference. Dr. Cohan fore-warned us that this might be the case as she might have, for that exacerbation, missed her "window of opportunity." Robin was then put on Betaseron which she took for about a year. But she never liked Betaseron because of the site reactions. Fortunately for us, Dr. Cohan and his associate, Dr. John Richter, were running one of the sites for the Avonex study and they put Robin into that study. This was after the double-blind portion of the study had been completed. All of the 600 subjects in the US participating in this phase of the study were getting actual Avonex. Robin has been on Avonex, via the study, for @65 weeks now. Although the drug has been approved by the USFDA, she continues to get her Avonex for free until she has completed 104 weeks, as this was one of the guarantees that she was given by Biogen. She has taken much better to the Avonex, especially since she only needs to get one injection per week (I give them to her as she cannot bring herself to do it) and there are no site reactions. More importantly, it appears that the Avonex is making a difference. Although she has had another exacerbation while on the Avonex, it was much less severe and the symptoms ended about twice as fast (with the help of Solumedrol) with no noticable residual effects. So, that's our story for now. I'd like to hear from others who are using Avonex to see what their experience has been. Thanks, Jack Jack Schnapper jack@mailzone.com ---------------------------------------------------------------------------- "The right of persons to be secure in their homes against unreasonable search and siezure shall not be violated, unless the federal agents outside the building are too tired to wait around any longer." - from "The Politically Correct Guide to American History" by Edward P. Moser, Crown Publishers, 1996 From alt.support.mult-sclerosis Fri Nov 22 16:38:40 1996 From: username@flash.net (obs, mn.jobs, nb.jobs, ne.job) Date: 20 Nov 1996 08:52:33 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Status: RO aglad to hear your doing better. But i'm new hear and haven't heard of CLAD?Could you find the time to enliten me? In article <32892E12.4E22@worldnet.att.net>, jackferg@worldnet.att.net says... > >Richard Long wrote: >> >> I personally am having excellent results with sub-cutaneous Cladribine >> >> (Leustatin) injections. >> >> I think my cpMS had been progressing so quickly this spring that I >> would have been lying immobilein a nursing home by now if it wasn't >> for this drug. >> >> It hasn't cured my cpMS, or undone much damage to my ravaged body, but >> the drug has done what it is supposed to do. >> >> And that is just halt the MS. For how long, I don't really know. >> Hopefully a few years. And I also hope one of the new treatments will >> be available then. >> >> I'll bet when the trial results come out that they are positive. >> >> Thank God for the internet! And thank god for huge multinational drug >> companies. (Actually, I'm not too certain about that thank you.) >> >> My GP is so impressed he's arranging to send me to a rehabilitation >> centre. I've never heard of anyone with cpMS being rehabilitated >> before, usually it was assumed that nothing could be done,the >> disease would quickly erase any gains made through physiotherapy. >> >> Please remember that my views are HIGHLY subjective on what is >> happening to me. >> >> Regards, >> >> Richard >> >> Burnaby, B.C. >> Canada >******** >I'm thrilled at how well you are doing ... as you may recall, you were >given my email address because you wanted to know how others who had >taken clad. fared. You hadn't decided yet if you should do it. When >you wrote to me it was clear that your ms was progressing at a rapid >clip and I, and others I know, who had taken clad. did well. > >So glad you went for it! I combined the clad. treatments with >aggressive PT. I am walking again for short distances, using a >4-wheeled walker (not the wheel chair or scooter -- they're for longer >distances (like over 1-2 blocks). I'm taking Tai Chi lessons now, it's >a "soft" Marshall Art, for balance and additional flexibility, >strengthening and stretching maneuvers. It may be far out ... who >cares?? I feel my balance is better (I feel more comfortable, even >confident & competent using a cane). > >My friends and family remind me ... you know where you were last year?? >You weren't driving (I am again), you're walking ... around the house, >even out of the house to go to one of my hoards of doctors (ugh-h-h) or >to the hair dressers! (Priorities ... I'm a woman who does best by >taking care of my narcissistic needs.) > >Anyhow, the best! > >Jackie Ferguson, RN, MS2 >jackferg@worldnet.att.net > > >PS Do you remember our initial contact as I do? ("I remember it well >...") From alt.support.mult-sclerosis Sun Nov 24 12:52:43 1996 From: Irwin Mortman Date: Wed, 20 Nov 1996 11:06:08 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Autoimmunity, Neurologic Disorders, viral triggers Status: RO ~From: Michael Watkins To: "Autoimmune Research" ~Subject: Autoimmunity, Neurologic Disorders, viral triggers ~Date: Tue, 19 Nov 1996 21:07:44 +0000 ~Reply-to: Autoimmune_Research@ksg1.harvard.edu ~Sender: Maiser@ksg1.harvard.edu MIME-Version: 1.0 This is really fascinating. See discussion about relationship between measles and MS and Salmonella and RA. Autoimmunity Underlies Several Rare Neurological Disorders WASHINGTON, DC, Nov 19 (Reuters) - Attendees of the 26th annual meeting of the Society of Neuroscience listened to a panel of experts who discussed autoimmunity and neurobiology yesterday. One of the panelists was Dr. Jerome Posner of Memorial Sloan-Kettering in New York, who was the first to describe the paraneoplastic syndrome and to theorize that there may be a link between autoimmune disease and cancer. Dr. Posner said that certain proteins are shared by both the central nervous system and some cancers. The body mounts an immune response to the cancer, but there is an associated immune response to the CNS proteins. In the case of the paraneoplastic syndrome, Purkinje cells are damaged causing ataxia, incoordination and other neurologic disturbances. Neurologic symptoms of the autoimmune disease are often picked up by clinicians as much as a year before the cancer is diagnosed, Dr. Posner said, and he speculates that the immune response that attacks the brain may also keep the cancer under control for a time. Dr. Michele Solimena of Yale described the rare "Stiff-Man Syndrome," which primarily strikes adult women and which causes severe muscle rigidity and painful muscle spasms. He pointed out that more than 50% of affected patients have insulin-dependent diabetes mellitus, and he believes there is a link between the two conditions. Dr. Solimena reported that the autoimmune target in Stiff Man Syndrome is an enzyme that controls muscle activity; pancreatic cells also produce the same enzyme. Dr. Scott Rodgers of the University of Utah described how the intractable seizures of Rasmussen's encephalitis, which were previously only manageable through hemispherectomy, can now be virtually eliminated by plasmapheresis. Dr. Rodgers says the seizures are caused by antibodies to neural receptors, which are removed by plasmapheresis. Although treatment is very effective, Dr. Rodgers noted that the effects are not maintained for long, necessitating periodic retreatment. Dr. Lawrence Steinman of Stanford presented the Society of Neuroscience audience with more evidence linking multiple sclerosis to the measles virus and also to human papillomavirus. He also said there is mounting evidence of a link between gram-negative bacteria such as Salmonella and the development of rheumatoid arthritis. Irwin Mortman Voice 513-891-7359 FAX 513-891-8186 E-Mail mortman@iac.net Cincinnati, OH From alt.support.mult-sclerosis Sun Nov 24 12:55:25 1996 From: Walt Date: Wed, 20 Nov 1996 21:11:14 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Current Research Updates Status: RO 22 November 1996=20 Update on Neutralizing Antibodies Against Interferon Beta-1b= (Betaseron=AE)=20 Detailed information about the occurrence of antibodies that may neutralize the benefits of interferon beta-1b (Betaseron=AE) has been published in the medical journal Neurology. Thirty-five percent of individuals treated with the now-standard dose of Betaseron=AE in the= pivotal clinical trials developed neutralizing antibodies (immune system proteins), most within the first year of treatment. In these individuals, the benefits of treatment on reduced relapse rate and accumulation of brain lesions were lost after about 18 months. For the 65% of individuals who did not develop neutralizing antibodies, clinical benefit remained, with as much as a 50% reduction in relapse rate and no significant increase in MRI-detected lesions for as long as four years of treatment. Physician guidelines for discontinuing Betaseron=AE treatment in those who develop neutralizing antibodies have= been established. Berlex Laboratories has developed a laboratory measure for neutralizing antibodies against BetaseronR that is not yet fully validated. Berlex is making the lab test available free of charge on an investigational basis. Once validated, this lab test may offer guidance in determining those individuals with MS for whom the treatment is no longer working. More info available at http://www.nmss.org/msinfo/current_research/updates/RMP9701.html ;~):-);~) Walt in Winnipeg, MB., Canada -------------------------------------------------------------------- Crutch's Corner http://www.cris.com/~Debwalt/ -------------------------------------------------------------------- =20 GRAPELINE Join the GrapeLine - Ciska GrapeVine http://www.cris.com/~Debwalt/gsx/gsx.shtml -------------------------------------------------------------------- Walt | Nothing Left to lose | May the Force be with You Winnipeg, Manitoba, Canada | Live Well and Prosper -------------------------------------------------------------------- From alt.support.mult-sclerosis Sun Nov 24 13:00:37 1996 From: Crystalwoo@gnn.com (anonymous) Date: Fri, 22 Nov 1996 13:01:42 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4 AMINIPYRIDINE Status: RO Hello, My name is Kathy. I have secondary progressive MS. I have had several members contact me about 4AP so I thought I would share with everyone. I am taking 10mg. 4AP twice a day in a capsule form. The pharmacy puts the medication in a time release capsule so I experience the effects of the medicine 24 hours a day. The medication gives me more energy and better control of my legs and thought processes without any side effects. On two occasions I forgot to take my morning medication and found that I was extreemly fatigued and dragging my legs whan I walked. I was told by my nero that 4AP was an orphan drug undergoing FDA trials at the time I started it. From alt.support.mult-sclerosis Wed Nov 27 19:28:16 1996 From: LaVonne Murphy Date: Mon, 25 Nov 1996 20:49:48 -0800 Newsgroups: alt.support.mult-sclerosis Subject: IVIg Status: RO This is a multi-part message in MIME format. --------------4F7F146C3610 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Hi Gang As promised - the info on IVIg. And as promised, it is old. The results of this study have not been made known to us yet. Understand that it may not be completed. Finding subjects that meet the criteria may have taken some time and it has only been about 18 months since the study began. It takes 12 months to follow one client from start to finish and it is unlikely that the first person started medication on April 1, 1995. Then it takes additional time, after all clients have finished the testing, to study and prepare the results for publication. For more info, write info@nmss.org. They don't have any but with enough requests they may go after some preliminary stuff. Also note the address of Mayo. Write there too for info if you like. These are the guys that have to release the info for your edification. (Like that 50 cent word?) L --------------4F7F146C3610 Content-Type: text/html; charset=us-ascii Content-Transfer-Encoding: 7bit Content-Disposition: inline; filename="IVIG.HTM" RESEARCH & MEDICAL PROGRAMS DEPARTMENT NEWS News No.: RMP 17.95 ~Date: 31 March 1995 New Clinical Trial of Intravenous Immunoglobulin (IVIg) Therapy in Optic Neuritis Associated with MS; Study Subject Recruitment Underway Summary: A new three-year study of intravenous immunoglobulin (IVIg) to promote recovery of visual acuity in individuals with multiple sclerosis (MS) who have optic neuritis will begin April 1, 1995 at the Mayo Clinic in Rochester, Minnesota, under the direction of Dr. John Noseworthy and colleagues. This trial stems from earlier and ongoing National Institutes of Health and NMSS supported studies of IVIg in animal disease that resembles MS and in MS and will attempt to confirm a recent preliminary and uncontrolled study suggesting that IVIg might promote visual recovery in MS patients with optic neuritis. The study investigators are actively recruiting participants and information about how individuals may become involved is provided here. Details: Intravenous immunoglobulin (IVIg) is an intravenous preparation of immune system proteins (antibodies) which has been shown to provide some benefit to individuals with certain inflammatory and immune-regulated diseases of the nervous system, including some forms of myasthenia gravis and polyradiculopathy as well as immune-mediated muscle disorders. In studies in animals with an MS-like disease, treatment with similar antibodies promoted recovery of myelin insulation around nerve fibers which had been damaged through the disease process. Previous uncontrolled studies in people with optic neuritis have suggested that IVIg may help improve visual function. These data stimulated Dr. John Noseworthy and his colleagues at the Mayo Clinic and Foundation in Rochester, Minnesota, to initiate studies on IVIg in people with multiple sclerosis. The National Multiple Sclerosis Society funded an initial pilot study in which showed that IVIg could be administered safely to MS patients, and now a full-scale, NIH-funded, controlled clinical trial is underway to determine ability of IVIg to promote recovery of muscle strength in MS patients (see Research and Medical programs Department Newssheet #RMP 31-94, dated April 29, 1994). Now, a new study will begin April 1, 1995, of the effects of IVIg on visual acuity in individuals with optic neuritis associated with MS. Participants are being recruited for the study which will involve 60 men and women between the ages of 18 and 49 who have clinically definite or laboratory-supported definite MS. To participate, an individual must have developed loss of vision in one or both eyes of a moderate degree (visual acuity worse than 20/40) which has not recovered within a six-month period from onset. This level of visual loss must have been recently stable with no spontaneous worsening or improvement. The study will be placebo-controlled and double-blinded (neither patients in the study nor physicians will know who is on active treatment and who is on inactive placebo). Half of the patients in the study will receive IVIg and half will receive placebo, injected intravenously daily for five days with repeat treatments thereafter, once a month for three months (total" 8 infusions). Repeat clinical evaluations will be performed at 3, 6, 9, and 12 months after starting treatment. Benefit will be assessed primarily using measures of visual function (visual acuity, visual fields, visual evoked responses) and changes in neurological function. All treatment and evaluation visits will occur at the May Clinic's St. Mary's Hospital in Rochester, Minnesota. All medical and hospital costs associated with the study visits to St. Mary's Hospital will be paid by the study organizers, with the exception of the initial pre-enrollment consultation. Travel costs for participants and companions to the Rochester site will be partially subsidized by the study organizers. Individuals with MS-associated optic neuritis who have had a recent onset of moderately severe visual loss and who have failed to recover and who may be interested in participating in this new study, should consult their personal physician and/or the May group directly at" Intravenous Immunoglobulin Optic Neuritis Treatment Trial Department of Neurology, West-8 A Mayo Clinic 200 First Street, S.W. Rochester, MN 55905 Stephen C. Reingold. Ph.D. Vice President, Research and Medical Programs --------------4F7F146C3610-- From alt.support.mult-sclerosis Wed Dec 4 20:10:25 1996 From: ahalko@cc.helsinki.fi (Aapo Halko) Date: 3 Dec 1996 20:49:24 +0200 Newsgroups: alt.support.mult-sclerosis Subject: I am PhD Status: RO Hello, This is a re-intro. I am 33 years old male. I am a mathematician, my dissertation was September 14th 1996. I got my PhD papers last Friday. I am married, I have two daughters 6 and 1.5 years old. My first MS symptoms were numbness in hands and legs. I was symptom-free until 1990. Then gradually my left side has become spastic. From 1993 my right leg and hand started the same progression. My Kurtzke number is currently: 7.5 - Unable to take more than a few steps, restricted to wheelchair, may need aid in transfer, wheels self but may require motorized chair for full day's activities So I have secondary progressive ms. My medication has been several (12) 3-day methylprednisolon pulses during last two years. I stopped azathioprine last August since I will participate cladribine trial next February. My spasticity is treated with tizanidine: 5 times 6mg/day. I started to read alt.support.mult-sclerosis from the beginning. It was 1993, I think. I maintain a www site devoted mainly to ms research: MS Crossroads http://www.helsinki.fi/~ahalko/ms.html -- Aapo Halko * |_ http://www.helsinki.fi/~ahalko/ms.html * ___ O o A www page that collects MS links on the Internet.* From alt.support.mult-sclerosis Tue Dec 10 11:21:46 1996 From: longri@asterix.helix.net (Richard Long) Date: Fri, 06 Dec 1996 00:38:12 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: What progressive treatments? Status: RO Cladribine (Leustatin) is being tested for cpMS at six centres now. I think they've just about finished and will release the results shortly. It pretty definitely does stop progression in all cpMS'ers who've had it. I don't know of anything drug with a success rate like that, other than death. The Canadian study is: Study Name: "Leustatin (Cladribine) Clinical Trial in Chronic Non-Remitting Progressive Multiple Sclerosis" Protocol 2-CDA-MS-001 sponsored by Janssen-Ortho based in Toronto. Regards, Richard Burnaby, B.C. Canada LaVonne Murphy wrote: >Dan Rice wrote: >> >> I saw my neuro at the MS Clinic in Charlotte. He is fairly certain the >> MS is progressive, making Betaseron and Avonex inappropriate. My choices >> are Lidomide trials, chemotherapy, once a month slams with steroids, >> wait for a trial to begin for a new drug, or do nothing. Does ayone have >> experience or an opinion? >> >> Vicki >Vicki >Sounds to me like you need more info. Did he say there were likely to be clinical >trials coming up on anything soon? They usually don't do many on progressives. There >are two or three chemos being used. Did he explain all of them to you so you had an >informed choice? And how much steroids and what does it do to you in the way of side >effects. And did he thoroughly explain Linomide treatment and the possible side >effects. Is it available to him and you now? What does he think is the best and second >best treatment for you? And what about 4AP? >Go back and ask more questions if you didn't get all of this. None of us can make up >your mind for you when you have been given this many options. The only thing folks can >do is share experience. And you may want a second opinion on this one. > L Burnaby, B.C. Canada From alt.support.mult-sclerosis Tue Dec 10 16:05:04 1996 From: LaVonne Murphy Date: Thu, 05 Dec 1996 22:22:55 -0800 Newsgroups: alt.support.mult-sclerosis Subject: RESEARCH NEWS, Diets and stuff Status: RO Hi Gang Went to out Annual Meeting last night and learned a couple of things you might have interest in. Dr Lemke from Salk Institute spoke on research on remylination. He has two post doctorate students doing research on two different aspects of this. Sorry, didn't understand one of them at all. The other has discovered a protein that lives either in the cell bodies or the genes that control remylination by the oligodendrocytes, schwann cells and in the retina ONLY. Didn't understand this really well either. This stuff is more technical than I have ever studied. Am going to try to get a book on beginning genetics if I can find one in my price range. But this stuff is way above me so don't expect miracles. But they are making progress in this direction. Also Dr Shapiro spoke on current research on treatments and meds for control of Sx. They are testing BetaSeron for Secondary Progressives, which you all knew. They are testing Avonex on Primary Progressives and people just diagnosed or people as yet undiagnosed but with a few minor Sx to see if they can prevent the development of MS. Avonex is also expected to be approved in Europe, Canada and other developed countries within the next couple of months but approval by their medical systems could take longer because of the expense of the drug. They may wait until Copolymer 1 is approved to see if the cost is lower. Copolymer 1 is expected out in the spring in the US and has just been approved two weeks ago in Israel for use in the general MS population with RR. The report on oral myelin should be out in the late spring or early summer on the stage 3 testing. He had about 20 drugs and treatments, including the ones above, listed on a slide and said there are over 100 more in the process of being tested for all forms of MS. These tests are being done all over the world but most are here in the US. The US NMSS has put more than $200,000,000 into research in the last year!!! Over $2,000,000 of that is being done here in San Diego County. To quote Dr Shapiro, "There is more reason to have hope than ever before." I asked him about the availability of treatments and drugs in other countries. That's how I got the info about countries where medications are under the control of governmental medical plans. Unfortunately, other countries such as Iran, Iraq, and some other third world countries will not make these new medications or upcoming ones available to their people at all. A good deal of this is political. And most do not want to provide these expensive treatments available to the masses. (It's my guess that the rich will be able to travel out of country to obtain treatment and pay for it out of pocket.) DHEA: I was going to ask this question too but somebody beat me to the punch. It has not been studied at all for MS though Dr Shapiro stated that it has interesting aspects to it. I don't know if no one has presented a study that looks promising or if the committee that decides where the funds will go can't agree. Diet: There has been no diet adequately tested because clinical trials are not possible. The Swank Diet shows some promise but it may be because it is a *very* healthy diet for anyone. If you are going to try a diet, this is the one you should try. Vitamins and stuff: Stay away from B6. This can be disastrous for people with MS unless your MD has tested you and you are lacking on it. It should be carefully monitored even then. Melatonin can be fatal for people with MS. It is impossible for me to remember all the details on this stuff. We had two hours of lecturing and Q&A and this was held in the evening. My attention span is not always good at that time of day. You can e-mail info@NMSS.com for further info and address your inquiry to the Research Dept. or IRC (Information Resource Center) and ask for the technical stuff on your question. Be sure to include your snail mail address because any info will be sent to you that way. Hope some of this adds a little joy or at least releif to your Holiday Season. L From alt.support.mult-sclerosis Tue Dec 10 16:06:22 1996 From: lprevost@ix.netcom.com (Lee P. Prevost) Date: 6 Dec 1996 07:23:30 GMT Newsgroups: alt.support.mult-sclerosis Subject: New progressive treatments? Status: RO When I was having my MRI last week, my wife was talking to a lady who was in a brand new trial program. She claimed to be the first human on this medication. It's called AG284. I don't know who makes it. She's in the program from Mt. Zion in San Fransisco. The method of administration is through an infusion pump I think she said 3 times a week. I hope to talk with again to find out more about it and report back here. Lee From alt.support.mult-sclerosis Tue Dec 10 16:16:11 1996 From: Wayne Anderson Date: Sat, 7 Dec 1996 12:33:05 +0000 Newsgroups: alt.support.mult-sclerosis Subject: MS research in Canada Status: RO Here is a story from Canadian Press, about research in Kingston, Ontario. It's described as a breakthrough, but note the last sentence -- that it could take more than a decade to come up with an effective drug. --Wayne Anderson ^AM-HEALTH-MS-Breakthrough@ code:4 ^Espy AP, Reuts@ ^Breakthrough in MS, Alzheimer's treatment@ KINGSTON, Ont. (CP) _ A breakthrough made by two Queen's University medical researchers may help scientists conquer degenerative diseases such as Alzheimer's and Multiple Sclerosis. Clinical neurologist Dr. Rick Riopelle and biochemist Greg Ross have been able to demonstrate in a laboratory how drugs can stop neuro-degenerative disorders such as Alzheimer's, multiple sclerosis, Parkinson's disease, and Amyotrophic Lateral Sclerosis. The researchers, working at the Apps Medical Research Centre in Kingston General Hospital, have discovered the conditions which block a self-destructive process in cells. Results of the two-year study were published Friday in Science magazine. ``We're very excited,'' said Ross. ``It really gives us a whole new view of approaches we may take to developing drugs that could be useful in treating these disorders.'' The breakthrough has personal meaning for Ross. His 70-year-old grandmother died from the neuro-degenerative disorder Amyotrophic Lateral Sclerosis, sometimes called Lou Gehrig's disease. ``It's a devastating disorder,'' Ross said. The researchers examined two protein molecules, one a receptor and the other a signal for cells to destroy themselves. They were able to develop a drug that blocked the receptor so that the self-destruct message didn't get through. The process is necessary, said Ross, so that cells in the brain can be eliminated when they make wrong connections. ``Cells have to have the ability to kill themselves,'' said Ross, ``and during development in people under the age of two years old, the ability...is an absolute requirement. ``But the problem is that the cell may inappropriately use these same mechanisms in the mature nervous system, where you don't want these cells to die.'' Ross said the discovery won't produce immediate results for sufferers because the drug used by researchers can't be used for treatment because it's dissolved by the body too quickly. But the discovery will be key in determining the kind of drug that could stop such degenerative diseases, Ross said. That could take more than a decade, he added. CP 2344ES 06-12-96 From alt.support.mult-sclerosis Mon Dec 16 15:17:15 1996 From: David T. Mintz <103254.1663@CompuServe.COM> Date: 12 Dec 1996 15:51:00 GMT Newsgroups: alt.support.mult-sclerosis Subject: Report on MULTIPLE SCLEROSIS UPDATE MULTIPLE SCLEROSIS CLINICAL UPDATE DECEMBER 8, 1996, NYC Here are some of my impressions of the above update which was presented by Drs. Weinreb,Raine,Weiner.Grossman,Kupersmith, Knobler and Herbert, 1. The animal models of experimental allergic encephalomyelitis now seem more likely to be truly analagous to human multiple sclerosis, even though the acute human lesion cannot be studied and the adhesion molecule noted in animals had not yet been found in humans(a molecule that seems to facilitate attachment and penetration of blood-brain barrier by T cells. 2. The multiple cytokines, interferons, and other chemicals involved in the disease process show a similar pattern in animals and humans and vary with relapse and remission. 3. The MRI now has the capability of quantifying the total burden of disease as well as often identifying an acute lesion. The previous lack of correlation between the MRI and clinical status has lessened considerably. 4. The disease process can now be more sensitively monitored by the use of serial MRIs and cytokine studies. This may eventually be invaluable in evaluating therapy accurately and speedily. 5. The disease process involves many steps and could potentially be blocked at any of these steps. Briefly; Antigen is presented to a myelin autoreactive T cell(not pathogenic) at a special receptor site on the cell. The process is complex and involves histocompatability(genetic) and costimulatory molecules attached to the antigen presenting cell. The antigen is probably a foreign protein produced by a virus or other infectious process, resembling some component of myelin. At that point the T cell becomes activated and migrates to the blood brain barrier which it penetrates.It then congregates around a blood vessel and calls forth a large number of other T cells and macrophages which attack the myelin sheath of the brain cells and the oligodendrocytic cells which make and nurture the myelin. The secretions that are called forth by the activated T cells to aid this invasion are interleukin-2, interleukin-12, interferon gamma, and TNF. Eventually other activated T cells secreting interleukin-4, interleukin-10 and TGF-beta gain ascendancy and down grade the previous process producing a failure of activation with remission. Whether the TH1(bad) T cells can be turned into TH2(good) T cells is under study. 6. In chronic or secondary progressive multiple sclerosis T cells remain chronically activated! 7. Some of the therapies in use or under study are as follows: a. Interferon-beta and Interferon-beta-1a: Treatment produces a significant reduction in relapse rate. Secondary progressive multiple sclerosis is now under study. Mechanism: Several sites are affected. Interferon gamma and TNF are reduced. b. Copolymer 1: Relapse rate is reduced. Mechanism is unkown(may increase the suppressor downgrading cells or affect the antigen presenting site because of its myelin components). c. Oral bovine myelin: Relapse rate was reduced in a small series. No side effects. Mechanism: Oral tolerance of an autoantigen. A two year controlled trial in relapsing-remitting disease will be completed this spring d. Immunosuppressants: 1. Cladribine: Still experimental. It may have significant therapeutic effect, tho its toxicity is likewise significant. Further studies in chronic progressive multiple sclerosis are in progress From alt.support.mult-sclerosis Mon Dec 16 15:19:45 1996 From: LaVonne Murphy Date: Fri, 13 Dec 1996 22:52:16 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Re: CLADRIBINE !!! I am looking for this Andrzej Kowalczyk wrote: > > Does anybody know how can I get this cure. I'll be very thankful if somebody > send me any information how and where I can get this cure. > > Andrew Andrzej Cladribine is not a cure. It is a chemotherapy for hairy cell leukemia in children. It was noticed that it attacked the same T cells suspected to be active in MS and was specific in it's targets. So a small test was done to see what it would do for MS. It worked pretty good for those with Chronic Progressive MS and so a larger test was authorized. This larger test is being done now but is probably about 3 years from completion. There are some side effects including a lowered platelet (cells used in clotting of blood) count on some people. This seemed to be the most severe one in the small test done on 40 or 50 people. Understand that these folks were divided into 3 groups. Two received two different strengths of the drug and one got a placebo. There is no loss of hair or nausea associated with this chemotherapy but I don't know the reason for that. It is approved in the US for use with the kids who have leukemia and so is on the market here. I do not know where else it may be available. A very few neurologists are using this drug outside of the test areas which are scattered all over the US. It is not covered by insurance for MS as far as I know. I have talked personally to some of the people in the first test and a couple who have taken the drug outside of the test. They feel that this drug stopped the progression and some even recovered some function but not a great deal. And one who I saw a few nights ago who was in the first test, though she felt the drug stopped the progression, was obviously having a very little more trouble walking. But she has been off the drug for about two years, maybe a little more. You can write to: Dr. J. Sipe Dept. of Neurology Scripps Clinic Torrey Pines Road San Diego, CA. 92037 USA L From alt.support.mult-sclerosis Mon Dec 16 15:21:18 1996 From: chabsj@aol.com (Chabsj) Date: 13 Dec 1996 15:57:13 GMT Newsgroups: alt.support.mult-sclerosis Subject: Report on UPDATE part II (3rd try) Report was truncated on Compuserve. Continuation continues herewith on AOL. d. Immunosuppressants: 1. Cladribine: Still experimental. It may have significant therapeutic effect, tho its toxicity is likewise significant. Further studies in chronic progressive multiple sclerosis are in progress . 2. Other immunosuppressants: Limited effects and significant potential for toxicity. Mechanism: general suppression of the cellular components of the immune process e. Linomide: Favorable results in small trials with relapsing remitting and secondary progressive disease. Significant side effects. Three year study of different doses and placebo in progress. Mechanism: Unkown(It may stimulate suppressor cells or suppressor cytokines). f. Intravenous limited high dose methylprednisolone for an acute attack. Probably shortens the acute attack and may have some effect on the severity of the disease. Mechanism: Decreases the inflammatory and immune response during treatment. g. Monoclonal antibodies: In the experimental stage.Mechanism: The antibodies will combine with and therefore block specific receptors at the antigen presenting site and elsewhere in this disease process. They may also combine with other harmful molecules to which they have been sensitized(eg antiadhesion molecule antibody). 8. Even if a therapy is effective, there will be non-responders. This does not make the drug a failure!. A different acceptable therapy which fails in some others may work for that person. 9 It is likely that multiple therapies will be method of the future, thus hitting the process at several points. 10. It is likely that successful therapy will be continuous or regularly intermittent despite remission (no waiting for a relapse to occur). 11, Excellent presentations were also made at this meeting on symptomatic management and advances in neurorehabilitation. They are beyond the scope of this summary but will be discussed if sufficient interest.. David T. Mintz From alt.support.mult-sclerosis Tue Dec 31 16:40:04 1996 From: Wayne Longman Date: Mon, 30 Dec 1996 01:30:25 UT Newsgroups: alt.support.mult-sclerosis Subject: Re: Imuran and/or methotexate experiences I was on methotrexate for one year. I had developed weakness in both arms that was progressing slowly but steadily. I took 3 pills a week, 7.5 mg. I found that the progression stopped. I had my blood tested every two weeks while I was on the drug - liver studies to identify any development of liver problems. No problems detected. At the end of the first year, my neuro suggested that the dosage should be increased to see if strengthening of my arms could be accelerated. As I was moving to another city, he left the adjustment of dosage to the next doctor. Instead of a new city, we moved from Canada to the USA. The neurologist here was not familiar with methotrexate. I came off the methotrexate to become eligible for the drug trials of betaseron for progressive forms of MS. That was about 7 months ago. The weakness in my arms is returning but has not yet reached the level I was at 2 years ago. I can drive my car now without excessive fatigue (THe symptom that had precipitated the start of methotrexate) I would highly recommend the drug - under the care of an informed and conservative doctor. The side effects can include severe liver damage. Some people experience thinning of their hair but not complete loss of hair as is seen in the higher doses used for chemotherapy for cancer (Cancer dosages are in the region of 250 to 350 mg versus doses less than 20 for most MSer treatment) THe drug is also used for rheumatoid arthritis. I found that I tired more easily on my pill day. At the beginning I expirienced some mild to moderate nausea - unpleasant smells tended to trigger the nausea. For the most part this occurred only on pill day and the severity decreased substanially within a month or two of starting the drug.