From alt.support.mult-sclerosis Mon Jul 1 12:22:56 1996 From: dbell@wolfenet.com Date: 29 Jun 1996 15:53:12 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Azathioprine / Imuran Status: O > Mike Burrows writes: > Hi All, > > My neuro consultant has suggested that I start taking Azathioprine (UK > Trade name Imuran). This apparently works on the imune system by > damping down it's activity, which if it is assumed that MS is an > Hi Mike, My neuro presecribed Imuran for me 9 years ago when I was first diagnosed CP. I have been taking it since then with no serious side effects with the exception of one time hospitalized with a soft tissue infection in my left arm. I am rarely ill and am holding my own with the MS for the past 2 years. The entire year before that I was off the Imuran and taking Betaseron. My condition declined in that time and has remained about the same. The Imuran has been a good choice for me although I do worry someabout the increased risks of certain types of cancer. Be sure if you decide to go on it that you get frequent blood tests in the beginning and then every few months, Imuran can cause a decrease in your production of white blood cells which if it goes too low may be irreversible. Also there is the potential for liver damage. Not a drug to take lightly bu tis worth a try. E-Mail me if you want or need more info. Good Luck to you Janet Bell > > >>>> From alt.support.mult-sclerosis Tue Jul 16 11:03:01 1996 From: wmenck@omnifest.uwm.edu (Werner H. Menck) Date: 10 Jul 1996 16:08:30 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Spouse asking for words of wisdom..... Status: O My wife and I faced this problem 15 years ago. It took a long time to resolve it because I ( the one with ms) did not insist on getting help from outside the marriage. Sometimes a couple or one of them wants to solve the many problems that are caused by the illness. It just cannot be done without eventually splitting up. Each situation is different so the only generality that holds true is to communicate with each other and with those on the outside who have a genuine desire to help and those are professionally trained to help. If keeping the illness confidential is important, the task of communicating is more difficult, but it still remains essential. We had great difficulty doing what I just mentioned but eventually communication took place between us mostly because we sought and secured help from others. In our case, the help came from unexpected sources but, because we were resolved to stay together, the many problems eventually were solved and today our marriage is as happy as such an inherently complicated relationship can be. I lead a useful and happy life and I am secure in knowing that my wife feels likewise. From alt.support.mult-sclerosis Tue Jul 16 11:07:35 1996 From: anand ivatury Date: 11 Jul 1996 12:31:14 GMT Newsgroups: alt.support.mult-sclerosis Subject: 4 AP Status: O i have CP Ms and have been on 4 aminopyradine for 3 months with tefirric results, makes me so happy, i just wanted to shout that out From alt.support.mult-sclerosis Fri Jul 19 10:05:21 1996 From: gemmamp1@aol.com (GEMMAMP1) Date: 17 Jul 1996 17:34:46 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Misled by Information on the Net? Status: O A reporter is doing a story on people with MS who have been either misled by or given false information on the internet about treatments for MS. If anyone here feels they fall into this category and are willing to talk to a reporter about it, please contact: Arnee at the MS Society: 212-476-0436 or respond to this message by E-mail at: GEMMAMP1@aol.com. Thank you. From alt.support.mult-sclerosis Tue Jul 30 15:54:13 1996 From: LaVonne Date: 29 Jul 1996 04:15:36 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Status: O Hi part of the gang I have not used Cladribine myself but live in San Diego where the testing is being done. Yes, they are still studying the large group at Scripps Clinic and other sites around the country. The study is being overseen by Dr Sipe. I have had contact with many of the people who were in the small test. In addition, there are a couple of neurologists in the community using Cladribine on those chronic progressives who are in rapid decline or having lots of new symptoms and have not had success with more conventional treatment. Like all other treatments for MS, some are having no noticable positive effects and some are having remarkable improvement. Like one is able to again use a walker and has not walked for a little more than a year. She did keep her muscles and ligaments and tendons in shape by exercising though. No matter what else goes wrong, this is important because nothing will work if the parts are dammaged for lack of use. Sometimes the Cladribine does no more than stop progression for a while. But when you live with this disease, even this is progress for some. Good luck with your personal trial of this drug! L. From alt.support.mult-sclerosis Tue Jul 30 15:55:21 1996 From: NEURON@usa.pipeline.com(HERMAN J. WEINREB) Date: 29 Jul 1996 04:30:23 GMT Newsgroups: alt.support.mult-sclerosis Subject: Free Audio Cassette Lecture on MS Status: O FREE AUDIO CASSETTE TAPE NEW ADVANCES IN THE TREATMENT OF MULTIPLE SCLEROSIS Herman J. Weinreb, M.D. Associate Director Multiple Sclerosis Care Center Assistant Professor of Neurology New York University Medical Center Chief, Neurology Service New York Veterans Affairs Medical Center Recorded from a public lecture held at New York University Medical Center, New York City, on June 27 1996. TOPICS INCLUDE: · What is MS? · What are the newer treatments for MS? (Avonex, Betaseron, · What causes MS? Copaxone, methotrexate, cladribine, linomide, etc.) · What is the role of · Treating the symptoms: spasticity, fatigue, pain, bladder, depression, etc. the immune system in MS? · Preventing long term complications · What is the course of MS? · Future research directions, heredity, pregnancy in MS, and other issues · What is the role of the MRI scan? · A question and answer session with the audience is included TO RECEIVE THE AUDIO CASSETTE, SEND $6 (for shipping & handling) TO: JBD Communications For more information: (212) 439-5006 945 West End Avenue Suite 12D New York, NY 10025 From alt.support.mult-sclerosis Wed Jul 31 11:28:55 1996 From: blackhawks@POSTOFFICE.WORLDNET.ATT.NET Date: Mon, 29 Jul 1996 18:44:27 +0000 Newsgroups: alt.support.mult-sclerosis Subject: Avonex Status: O Dear MS List: I was on Betaseron for 2 years, but the side effects were bad and never got much better. I have been on Avonex for about a month and from the first day the side effects are barely noticeable. I have some chills a few hours after the injection and a small fever later. I take Tylonel or Ibuproffen before bed and it keeps the headaches away. I can say from experience, the Avonex side effects are a million times MORE tolerable. I will stay on Avonex and the shots hurt less, even with a longer needle. I am no longer on the MS List, due to the large number of messages each day. I would suggest when a person wants to respond to someone, they send a private message directly to that person and not to the entire group. There is just too much mail and I don't need to read responses from one person to another. Cindy Hamilton blackhawks@worldnet.att.net From alt.support.mult-sclerosis Wed Aug 7 11:41:34 1996 From: Gabriella <101631.3427@COMPUSERVE.COM> Date: Sun, 4 Aug 1996 20:41:45 EDT Newsgroups: alt.support.mult-sclerosis Subject: Hopes for another MS breakthrough Status: O This is all that I received from Prof.Thwaite in response to a request for more information regarding the radio interview as posted a couple of weeks ago. The intervew transcript was posted to the Technion MS List on Mon, Jul 15, 1996 in the thread: "New develpoment?" Gabriella [sondrio@ponyexpress.com ] --------------- Forwarded Message --------------- ~From: Cliff Jeal, INTERNET:Cliff.Jeal@Bristol.ac.uk Cc: INTERNET:Avril.Lear@Bristol.ac.uk ~Date: Wed, Jul 24, 1996, 04:42 RE: MS breakthrough Research in Multiple Sclerosis in the Department of Pathology and Microbiology, University of Bristol (UK) What is Multiple Sclerosis (MS)? MS is a disease affecting the myelin sheath which surrounds nerve axons in the central nervous system (CNS). Myelin serves to insulate the nerve axons thus helping them to work effectively. MS is believed to be an autoimmune disease. This means that the immune system, which normally functions to defend the body against infectious agents such as viruses and bacteria, turns against the body itself and, in the case of MS, now attacks the myelin sheath. What are the current treatments for MS? At present there is no cure for MS. Since this is an autoimmune disease, one preferred option has been to treat with immune suppressive drugs. These drugs can control the progression of but unfortunately do not cure the disease. A great deal of interest has been expressed in the use of beta-interferon. This drug does not provide a cure for MS but does reduce the number of relapses suffered by patients with relapsing-remitting disease. As with all immune suppressive drugs, beta-interferon is not without side-effects but it offers hope that disease progression may be contained, at least in the short-term. The aim of our research in MS is to understand how the disease arises and thereby find a more specific way of treating this complex disease. Why does MS arise? Research in many laboratories has now established that T lymphocytes of the immune system are centrally involved in this and other autoimmune diseases. These cells develop in the thymus of the body where they undergo a strict selection or schooling process. This is designed to ensure that cells with the potential to attack the body, or misbehave, are filtered out. Clearly some T cells escape the filtration process and have the potential to cause diseases such as MS. Precisely what triggers T cells to attack myelin in any one individual is not known and is an area of intensive research. Will it be possible to re-educate T cells once they have left the thymus? Recent research from the immunology laboratories in Bristol has shown that it is indeed possible to switch off potentially harmful T cells. The idea for developing such a new treatment arose from advances in our understanding of the way in which T lymphocytes work. These cells only become dangerous following their activation by small fragments of protein, known as peptides. Further work has shown that these peptides can suppress autoimmune responses depending on how they are introduced to the body. A number of routes of administration have proven effective and among these the nasal route is looking particularly promising. This means that treatment of diseases such as MS might simply involve sniffing a small amount of solution containing the appropriate peptide. MS is a complex disease and probably involves many different T cells with specificity for many peptides. Initially it was thought that it would be difficult to treat such complex diseases with simple peptides. Recent work has shown, however, that, as long as you choose the right one, a single peptide can suppress the immune response to a whole range of peptides and even to myelin itself. Is there a drug ready now? This is a new discovery which has arisen from 10 years of laboratory work in this country and the U.S.. It is now time to screen as wide a group of MS patients as possible in order to allow us to choose the right peptide for a clinical trial. The design of the peptide will be crucial. Our recent work has shown that simple modification of one of its building blocks can dramatically improve the efficacy of a peptide for switching off autoimmune T cells. How long will all this take? We hope to have identified the best peptides within two years. As peptides are being identified they will be modified to improve their efficacy and concurrently tested for safety. As soon as safe and effective peptides are developed they will be processed for clinical trials. Work carried out in this laboratory is supported by grants from the Multiple Sclerosis Society of Great Britain and Northern Ireland. David C Wraith (e.mail: D.C.Wraith@bris.ac.uk) Owing to transmission problems this email is being transmitted via another mailbox From alt.support.mult-sclerosis Wed Aug 7 18:47:51 1996 From: "McQ'S" Date: Sun, 4 Aug 1996 17:37:40 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Famous MS'Rs ListREPEAT Status: O >Subject: Famous MS'Rs List -REPEAT >Max and anyone else - if your interested I'd be happy to share back with you: > > "Famous MS'ers" > >Annette Funicello ...of Walt Disney Fame, beach movies, skippy peanut butter commercials >Richard Pryor...Black comedian, actor, stand-up comic >Donna Fargo...Country Western Singer >Jacueline duPre...World famous cellist >Rodger MacDougall...famous Britisch playwright >Barbara Jordan...Black Congress woman, professor, civil rights activist, humanist >Joseph Hartzler...Cheif prosecuter for the Oklahoma bombing case >Marion Boyd...Ontario Attorney General 1995 >Lola Folano...Singer/dancer >Allan Eagleson...Hockey empressario & lawyer >David Hum...former superbowl quarterback for Oakland Raiders >Terri Garr...Actress >Victoria Williams...Singer >Brian Irvine...World class Britisch soccer player >Gloria Estefan's father >Michael Crichton...Writer/producer tv's ER show being one of his productions >Osmond Brother(Alan or Wayne)...Singer/musician > >Anyone have any more to add??? Any of you out there deserve to be on this list??Share... > >There we have it...young/old/white/black/spanish/male/female/all varied career walks of life/all sharing in the same health problems we have. > >Thanks again for all your input. > >Tare > > > > >At 09:23 PM 7/13/96 -0400, you wrote: >>Going to publish the names? It'd be interesting to see. >> >> >>Regards, >> >>Max >> >> >> >> >> >> >>At 18:10 13/07/96 -0500, you wrote: >>>Hello to everyone. >>> >>>I would like to thank everyone who responded to my request for names of >>>famous ms'rs. With your help I have compiled a list of some 15-20 "famous" >>>people with ms. Thank you all for your input. Each day as we all struggle >>>with our daily challenges we are all famous in our own right. Some day (I, >>>hope and pray soon)we will be telling stories about "I remember when..." >>>before they had a cure for ms. Until then, take care of yourselves. >>> >>>Cyber hugs, >>> >>>Tare >>> >>> >> >> >> > From alt.support.mult-sclerosis Sun Aug 11 11:03:05 1996 From: Sara Bellum Date: Thu, 8 Aug 1996 11:14:06 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: Kurtze Extended Disability Status Status: O Hi, Raia - Here's the URL for the Kurtzke Expanded Disability Status Scale - http://222.micronet.fr/~mondor/edss/htm. It reads as follows: Kurtzke Expanded Disability Status Scale (Kurtzke, Neurology, 1983, 33:1444-52) This is a scale designed to follow overall course of a disease outcome or treatment. Therer is a correlation between the Kurtzke Functional System (FS) rating system and the Expanded Disability Status Scale (EDSS) 0 - Normal neurologic exam. 1.0 - No disability, minimal signs on one FS 1.5 - No disability minimal signs on >1 FS 2.0 - Minimal disability in 1 FS 2.5 - Minimal disability in 2 FS 3.0 - Moderate disability in 1 FS; or mild disability in 3-4 FS, though fully ambulatory 3.5 Fully ambulatory but with moderate disability in 3-4 FS 4.0 - Fully ambulatory without aid, up and about about 12 hrs./day despite relatively severe disability. Able to walk without aid 500 meters 4.5 - Fully ambulatory without aid, up and about much of the day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Relatively severe disability. Able to walak without aid 300 meters 5.0 - Ambulatory without aid for about 200 m. Disability impairs full daily activities. 5.5 - Ambulatory for 100 m., disability precludes full daily activities 6.0 - Intermittent or unilateral constant assistance required to walk 100 m. with or without resting 6.5 - Constant bilateral support required to walk 20 m. without resting 7.0 - Unable to walk beyond 5 m. even with aid, essentially restricted to wheelchair, wheels self, transfers alone 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 8.0 - Essentially restricted to bed or chair or perambulated in wheelchair, but may be out of bed much of day, retains self care functions, generally effective use of arms 8.5 - Essentially restricted to bed much of day, some effective use of arms, some self care functions 9.0 - Helpless bed patient, can communicate and eat 9.5 - Unable to communicate or eat/swallow 10.0 - Death Raia, due to the length of this post, I'll post KURTZKE FUNCTIONAL SYSTEMS separately so that you can relate the FS to that system. This is the 1983 version; Kurtzke's first disability status scale included 10 criteria and was published in 1961. Take care, At 04:39 PM 8/7/96 -0700, you wrote: >Does anyone know of a site where I can find a description by the numbers >for the Kurtze Extended Disabilty Status. I'm not sure I have the name >right, but I'm sure I have seen it referenced in this group. All my >searches come up empty except for a report on clabi?sp which just uses >the string. > >Thanks, >Raia > > Sara Bellum From alt.support.mult-sclerosis Fri Aug 16 12:38:46 1996 From: Ann and David Grabner Date: 14 Aug 96 16:15:18 GMT Newsgroups: alt.support.mult-sclerosis Subject: Avonex Truth? Status: O Hello, I have had four shots of Avonex. Side effects have been minimal. My wife , Ann, is going to start giving me the shots at home. She has been giving herself MS shots for over two years, on the every other day scheme. We are not new to this thing. We like our NeuroDoc. He focuses on MS. I trust his opinion and knowledge a lot more than many of those who write on this news group. We have a friend that has been on the real Avonex for over a year and is doing very well on it(2nd progressive). Just one friend and one doctor,but to me, better than all the stats and negative garbage. Time will tell. I believe in the positive mind. Regards, David From alt.support.mult-sclerosis Sun Aug 18 18:59:23 1996 From: longri@asterix.helix.net (Richard Long) Date: Sat, 17 Aug 1996 01:59:39 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Status: O Finished Second Course I've just completed the second of six courses of subcutaneous injections, so I don't really have much to report. I'm hopeful that when I'm finished at least I won't be worse for a few years. I wanted IV, but agreed on subcutaneous as I was getting desperate. I'm paying for it myself, and believe me, it is quite expensive! $3700 (Cdn) x 3. Only side effect I've noticed is I get very sleepy [not fatigued, just very sleepy] several times during the day. But apparently this is a common problem with most chemotherapy. Other than that, no problems. I don't think my MS has worsened, but my opinions are pretty biased! ahalko@cc.helsinki.fi (Aapo Halko) wrote: >In <4tdn4j$92v@van1s02.cyberion.com> longri@helix.net (Richard Long) writes: >>>I started a course of subcutaneous Cladribine (Leustatin) last night. >>>I wondered if anyone else had tried it. >Hi >Cladribine trials will probably start here in Finland at the beginning of >1997. I may participate the trial. So I am interested in your experiences. >-- >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 Mon Sep 2 20:53:30 1996 From: ewoldt@omnifest.uwm.edu (Elizabeth Ann Woldt) Date: 30 Aug 1996 14:39:33 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: ***Berlex and Antibodies to Betaseron Status: O Michael, it is MY experience that Berlex IS doing studies about antibodies -- and the preliminary results are, that the body does develop antibodies, but the Beta continues to do what it is supposed to do, but not quite as well....that is, reduces the number and intensity of exacerbations.... Both I and my doctor have called them, and researched this, and this is what we've learned..... are we misinformed? Ann From alt.support.mult-sclerosis Tue Sep 3 10:51:54 1996 From: jshore@eazy.net (Jeffrey Shore) Date: Sun, 01 Sep 96 11:18:20 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Methotrexate.... Status: O (Michel GUEDJ) wrote: >Gerry McCready wrote: > >> Hi: I would like to communicate with anyone taking methotrexate, to discuss >> their dosage and regimen and any results. Thanks. > >I'm taking Metho since May 96. >Dosage is 7.5mg a week, 3x2.5mg tablet at 12 hours interval. >Associated with 2 tablets of Folic acid a day. >No regimen, no results of course ;-) I think that the goal is only >trying to reduce MS course? > Guess no one told you: It takes 3+ months to begin seeing results, if there are results to see. Yes, the goal is to slow the rate of progression. Dosage varies by how your body tolerates it and how aggressive your doc is (before I fired her, one neuro was so conservative that divine intervention was more likely than her prescribing water). I've been on methx since about Feb 94 when I was dropping like a rock. After 6+ months I had stabilized and actually made up some lost ground. The last 4-6 weeks I've been having increasing attacks (frequency/intensity/scope) so the methx efficacy for me may have run its course ... or I may just be going through a bad but limited period. If it stops, it was limited; if it doesn't, then it isn't. [What?!?]. I am pushing my docs very hard to switch me to Avonex. One wants to stay with the methx, the other wants to try Avonex for a year. Oh, I'm currently on 4x2.5mg once a week at a gulp and 1 folic acid of [x?]mg daily. Tacked-on message for Chris Boyes: There you are, lad, the update I promised to post. Glad I procrastinated, as usual, as the renewed attacks started after we last spoke. I still owe you 7 pints, 3 phone calls, and 1 apology. All in time. Jeff Shore jshore@eazy.net P.S. For alternative medicine buffs, an alchemist working out of a back-alley shop in Hoboken has determined that a free-fall from the Sears Tower in Chicago may have temporary salutary effects. However, the side-effects may be somewhat problematical and coherent feedback reports have been difficult to obtain. He is refining his treatment technique and results will be printed in next month's JAMA or Rolling Stone depending on negotiations. From alt.support.mult-sclerosis Thu Sep 5 14:46:59 1996 From: Susan Struthers Date: Tue, 3 Sep 1996 15:18:02 +0200 Newsgroups: alt.support.mult-sclerosis Subject: Copaxone experience Status: O I would like to second Mark Cummings' message about Copaxone experience, as my experience is similar. I have been taking it since Dec. '93 and have similar results to report. At first, the tiredness was gone and as late as last fall my energy level was up. However, progression of the MS was never halted -- I was subjected to batterys of tests [all the usual except MRI] annually, but they have only showed downsliding lately, although at first they remained the same. There have been no side effects, but neither are there primary effects anymore, it seems. I wonder if I should stop awhile. ~Date: Mon, 26 Aug 1996 10:07:58 -0600 ~From: Mark Cummings ~Subject: Re: Copaxone information I started on Cop-1 in November of 95. At first I noticed an immediate improvement in symptoms (more energy, less spasticity, greater physical endurance). Of the four of us in my neuro's research group, I was the only one with these positive results. I did not expect it, as I had been on Betaseron for 10 months with no positive results. These improvements have since subsided, and I seem to be stuck in the old secondary-progressive rut. If the Cop-1 is helping me, I don't know. I'm 37, dx'd in 1988. I walk slowly with a pronounce limp, fall over easily, have bowel incontinency and bladder hesitancy, and weak right eye vison. My symptoms are relatively consistant. All I can hope for with the Cop-1 is a slight braking of the downhill slide, and it's a $700/month gamble. On the bright side, I have experienced no adverse side effects, and it is extremely well tolerated. I would encourage it as a benign alternative to Avonex or Betaseron, especially for those who are intolerant of the interferon drugs. Good luck, and stay in touch. -- Aloha, Mark Susan Struthers email: susan@itc.it fax: +39 461 314591 From alt.support.mult-sclerosis Mon Sep 9 12:53:56 1996 From: Liz Carpenter Date: Thu, 5 Sep 1996 14:54:05 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Betaseron works for me... Status: O I am enrolled in a Secondary, Chronic Progressive study at the Lahey Clinic. For 3 months, I had the flu symptoms. Then they stopped. At 6 months, I had a breakthrough. My worst symptom, the fatigue, got better! I cannot believe it! My walking still looks a little "spastic," but I can do more of it. My first 3 tests were 60-75 feet. At my 6-month test, I walked 600 feet! Praise the Lord and don't give up with the Betaseron... Lindsey C. From alt.support.mult-sclerosis Wed Sep 11 19:31:34 1996 From: jshore@eazy.net (Jeffrey Shore) Date: Tue, 10 Sep 96 07:07:00 GMT Newsgroups: alt.support.mult-sclerosis Subject: METHX ---> AVONEX Status: O Greetings Gang of 437! This very brief post (neither Chanoch or Chris will believe that) is just an early announcement that my docs and I have arrived at a decision point: the methotrexate that I have been on for over 2.5 years seems to be losing effectiveness, so with the recent general availablity approval by FDA, I will be going for methx for a "detox" period of 6 weeks and then start standard treatment with Avonex. There will the usual brief monitoring for adverse side effects and general tolerance, but if all goes well, I will be on the Avonex for the next 12 months at which time we will reassess and determine whether to continue or not: SOP. In another posting, I will summarize as succinctly as possible my experiences with methotrexate, what brought on the decision to go with an alternative treatment--though either Betaseron or Avonex would have been more appropriate had my HMO been willing to pay for it when it became available or had Avonex already been on the street--and then post periodic notes as I gain experience with it. Naturally I will avidly follow the reported course and experiences of others receiving Avonex as well. Auguri e buona fortuna ai tutti, Jeff Shore jshore@eazy.net From alt.support.mult-sclerosis Mon Sep 16 17:23:33 1996 From: Rick Snider Date: 14 Sep 1996 21:50:44 GMT Newsgroups: alt.support.mult-sclerosis Subject: new MS book, free sample chapter online Status: O Cycle of Health: Living with MS by Marilyne Mabery is now available online through 21st Century Online Publishing. The book details how Mrs. Mabery has lived a very full life for more than 25 years after first suffering from MS at age 22. The book is filled with many personal and professional opinions on how to win the battle and live your life on your own terms. For a free sample chapter, just visit http://choicemall.com/dc/dc177-01 From alt.support.mult-sclerosis Wed Sep 18 14:05:58 1996 From: hfwright@ozemail.com.au (Howard Wright) Date: 16 Sep 1996 23:57:58 GMT Newsgroups: alt.support.mult-sclerosis Subject: Genes environment etc Status: O I recently heard an interesting radio interview on the ABC (Australian Broadcasting Corporation) Heath Report that set me thinking. The interview was actually about juvenile onset diabetes, not MS, but it occurred to me that the ideas being discussed may be relevant to MS. Like MS, juvenile onset diabetes is believed to be an autoimmune disease where the immune system attacks the islet cells in the pancreas. The distribution of juvenile onset diabetes has some things in common with MS. For example, incomplete penetration in identical twins, and an increasing incidence with increasing latitude away from the equator. The interviewee, Professor Kevin Lafferty, Director of the John Curtin School of Medical Research in Canberra, suggested that juvenile onset diabetes depends on a genetic factor and an environmental factor such as a virus or a bacteria. But, rather than being a cause of the disease, the environmental factor prevented the disease in genetically susceptible individuals. His theory is based on a study of mice bred to be genetically susceptible to diabetes. He has suggested that possibly an infection somehow primes the immune system in such a way as to prevent the attack on the islet cells. Is it possible that the as yet unidentified environmental factor involved in MS works the same way? Is it possible that those of us who have MS have the susceptibility to MS built in to our genes, and also somehow missed out on exposure to a common childhood infection rather than being exposed to some exotic bug? This could possibly explain the lower prevalence of MS in tropical climates and also the apparently increasing incidence of MS in recent years. Does anyone have any thoughts to offer? The full transcript of the talk is available on the web at http://www.abc.net.au/rn/talks/8.30/helthrpt/hstories/hr090996.htm From alt.support.mult-sclerosis Thu Sep 19 11:27:43 1996 From: chris@infosci.org (Chris Boyes) Date: Tue, 17 Sep 1996 15:01:16 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Chronic progroessive MS treatmen Status: OR alec@gryn.org wrote: : h>I hope you find it. I also am CPMS and so far nothing. : o> : t>Bill - Levittown, NY : w> : Can you get your doctor to look at Cyclosporin? : Since MS is an attack by the immune system on your CNS Myelin, perhaps something that : makes your immune system a tad more tolerant might help. : It's been used to treat Type 1 diabetes when it was detected before the Iles of Langermans were destroyed in the pancreas. : With a slower-onset ailment like MS, particularly the progressive type, it might be even more effective. : Query: Has Prednisone or any equivalent steroid been used for treatment? If it has, was it effective? The reason that I ask is that Prednisone is also a immuno-suppressant. As to the first question here is one abstract from a recent review I may be able to find more later. The second question has some answers available on the www server, or if no www then email infoserve@infosci.org Subject none or whatever it's ignored In the message body include the folowing: get ms-docs steroids.txt end Within a few mins you should get the ducument. If you don't complain to me. Chris The abstract for p2 is the same as p1 Immunotherapy in multiple sclerosis, part 1 Becker, CC;Gidal, BE;Fleming, JO American Journal of Health-System Pharmacy 1995 vol 52 no 18 1985-2000 Abstract The efficacies of corticosteroids and azathioprine (part 1) and of cyclophosphamide, immune globulin, cyclosporine, interferons, copolymer 1, and cladribine (part 2) in patients with multiple sclerosis (MS) are reviewed. MS is an inflammatory, demyelinating disease of the CNS that commonly affects young adults. The involvement of various immune mechanisms in MS suggests a role for immunomodulating therapy. The goals of immunotherapy vary with the clinical stage of the disease and include (1) improving recovery from exacerbations, (2) decreasing the number or severity of relapses, (3) preventing the development of chronic progressive disease from a relapsing-remitting course, and (4) decreasing further progression in patients with chronic progressive disease. In clinical trials, corticotropin and corticosteroids have been found to accelerate recovery from exacerbations. Tapering is often effective after high- dose induction therapy. Long-term maintenance regimens do not alter disease progression and are not recommended. Azathioprine produces modest benefits with respect to relapse rates and disease progression after two or more years of treatment; adverse effects are mild to moderate. Azathioprine should not be used in patients with aggressive disease who may approach severe disability in 6-18 months. Cyclophosphamide, because of its modest impact on disease progression and its potentially severe adverse effects, including cancer, should be reserved for patients with aggressive relapsing-remitting or chronic progressive disease in whom other treatments have failed to work; maintenance therapy is necessary after induction. Intravenous immune globulin may benefit patients with severe relapses; however, its efficacy remains unproven. Cyclosporine also cannot be recommended because of its modest efficacy, marked adverse effects, and high cost. Interferon beta-1b is a more specific immunotherapy that has been found to decrease the number and severity of relapses. This treatment should be considered in patients with relapsing- remitting disease who are having two or more exacerbations per year. Copolymer 1 and cladribine have shown some promising early results. Although various immunotherapeutic drugs can provide relief in patients with MS, none is capable of reversing disease progression, and some can cause serious adverse effects. Better understanding of the immunologic basis of MS may lead to more specific immunotherapies with more lasting benefits. -- Chris Boyes chris@infosci.org Surrey, UK. Tel +44-181-669-2838 For information about Multiple Sclerosis on the WWW http://www.infosci.org/ Or email infoserv@infosci.org, No Subject, 1 line in the message, info ms-docs From alt.support.mult-sclerosis Mon Sep 23 21:01:34 1996 From: longri@asterix.helix.net (Richard Long) Date: Sun, 22 Sep 1996 17:13:53 GMT Newsgroups: alt.support.mult-sclerosis Subject: Cladribine, Third course finished I did the third course of five day sub-cutaneous injections. Other than a bad bladder infection that landed me in the hospital for four days at the end of August, things are going fine. I feel more confident about the relentless course of my cpMS, as I feel it is temporarily haltedf now. I'm eagerly awaiting the results of the blinded trials on sub-cut. clad injections which should be released soon. At least, I feel I have tried to do SOMETHING about my disease! rather than just sit back & feel sorry for myself. I think my GP reads this forum occasionally. I wish he would support my efforts to remain independent instead of just doing as little as possible for me. If I had had a stroke, or been in a car accident, he would adopt a different attitude, I think. He has the attitude that little can be done for MS, so he does little. From alt.support.mult-sclerosis Thu Sep 26 16:51:48 1996 From: sicherman@lucent.com (World's Largest Leprechaun) Date: 24 Sep 1996 18:22:46 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: does betaseron work? (Not looking promising) In <3236f940.12084676@news>, steve@tropheus.demon.co.uk wrote: > > What you say about the availability of certain treatments on the NHS > is probably true but I would not want to take Betaseron or Avonex for > progressive MS because no one is claiming they would have any effect. > From what I've read they only work in a small number of cases for RRMS. My wife's been taking Avonex for 2 or 3 months. She can't walk any better, but now she can sometimes completely void her bladder. She couldn't do it before. Then again, her condition may not be progressive yet. It's hard to tell. -:- Nothing changes, But nothing's the same.... Dance and love, Eat and fight At the DISCO, Disco Delight! Bob Burden -- Col. G. L. Sicherman sicherman@lucent.com From alt.support.mult-sclerosis Mon Sep 30 14:26:37 1996 From: Ann Manasreh Date: Fri, 27 Sep 1996 20:11:37 -0600 Newsgroups: alt.support.mult-sclerosis Subject: Re: Avonex vs. Betaseron JayneDo333 wrote: > > Hi Folks -- I'm new here. My doc is giving me a choice of avonex or > betaseron. Does anyone have an opinion on which one I should choose? Just some thoughts. The betaseron subcu injection is more painful because the nerve endings are more numerous in the skin. Also seems to give more skin surface reactions. However, my neuro has suggested that BS and its every other day injections cause the body to have a more level supply of the drug. Avonex is almost painless to me and the side-effects have been minimal to me. But it does seem to cause an eneven supply of the drug in the body. The injection in the muscle causes a faster dispersion. My neuro was interested in Avonex because it was shown to slow progression. My neuro is actively involved with these drug studies--he did Cop-1 and he's doing the BS on progressives. He feels very positive about the possibilities of the drugs in what he has seen in the trials and in his own practice. From alt.support.mult-sclerosis Thu Oct 3 10:28:00 1996 From: LaVonne Murphy Date: 2 Oct 1996 06:04:26 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Copolymer 1 & 2CDA Sheryn wrote: >Hi all. My brother Ken was diagnosed with MS on the day an announcement >was made that Co-polymer 1 was approved by an FDA committee. (Thursday, >September 19th, 1996) It has to go through numerous other beauracratic >hoops before appearing on the market. However, not seeing very many Web >or Newsgroup internet references to copolymer 1, I'd like to see some >feedback and pointers to the progress of the FDA process. > (snip) Hi Gang Let me tell you what I know. Cop-1 was tested extensively in Israel (and maybe elsewhere) by TEVA Pharmaceuticals. But the US decided the drug had to be tested here. And so they did. It was submitted to the FDA shortly after Avonex. It supposedly does much the same thing as BetaSeron and Avonex except that it does not exhibit any remission of Sx. I know, BetaSeron was not tested for that either but since it's been on the market, it seems to be doing much the same thing as Avonex was tested for. This is not just personal observation from talking to clients who have used the drug but also from the observation of the neuros here and elsewhere. Cop-1 is a once a week injectable that will be a little less expensive than the interferons. The final approval is expected sometime in 1997 but there seems to be little doubt that it will be approved. Also have a little news about 2CDA for progressives. It seems to work! Know several people who have used the drug outside of the study (it's approved for Hairy Cell Leukemia and is on the market for that). Many have had improvement in Sx. One who was able to walk only a couple of steps with a walker (as in transfering) is now able to take a short walk outside every day (though still with a walker and someone standing by with her chair). This should give us all hope for the future. I have no idea whether or not the testing will show such improvement overall but apparently it works for some! L From alt.support.mult-sclerosis Fri Oct 4 20:41:25 1996 From: Mark Cummings Date: Wed, 02 Oct 1996 11:15:33 -0600 Newsgroups: alt.support.mult-sclerosis Subject: Re: Copolymer 1 & 2CDA To update LaVonne's post, Cop-1 costs about $700/month, it's a daily injection (1 cc, 25g needle), is mixed similar to Betaseron, only you switch needles, not syringes. It must be kept frozen, not just refrigerated. It may have similar results to the interferon drugs, but works much differently. It is a peptide drug made of synthesized amino acid copolymers (thus the name, copolymer-1). No headaches, no flu symptoms, pretty benign stuff. I've been on it a year, and while I'm not doing any rock climbing, I don't seemed to have progressed, either. I was on Betaseron for 10 months, I got steadily worse, no energy, and severe depression. Cop-1 works better for me. -- Aloha, Mark "When sitting, just sit, Above all, don't wobble." -Zen poem http://www.verinet.com/~cummings From alt.support.mult-sclerosis Fri Oct 4 20:46:00 1996 From: "rex" Date: 4 Oct 1996 05:33:09 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Beta questions I was on Betaseron for 26 months, and felt good but the last 6 months developed bad scaring and necrosis around the sites. After 2 painful surguries removing the ulserated tissue, I was taken off Betaseron and plaved on avonex. Same overall feelings but no site injection problems like Betaseron in fact no discoloration at all. I guess only time will tell. getting better all the time... rex keep smiling:) Pookey5409 wrote in article <5318jd$evg@newsbf02.news.aol.com>... > I have been on beta for almost 3 years and still not working. I am > ambulatory and also feel my symptoms or some what not so bad as used to > be. I have kept a journel since 89 so have alot to compare to. Fatique is > questionable. I have to say it is better, but I also stopped working about > 8 months after starting the Beta. You know what is to say I would feel the > same way if not on Beta, this is really a tuff evaluation to make, but it > sure does not hurt me by taking the injections. Linda Alvey > From alt.support.mult-sclerosis Sun Oct 6 15:25:20 1996 From: Robert Davidson Date: Thu, 3 Oct 1996 23:15:07 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Clinical trial???? >It seems I may have the opportunity to participate in a clinical trial of >Betaseron for secondary progressive MS, which is what they say I have...... > >I thought I would throw this out for comments as I consider this. >Eric Weinberg >a002083t@bcfreenet.seflin.lib.fl.us if betaseron can lessen attacks by frequncy and severity of about 35% for r/r that may mean it could provide some help also in secondary ms. i would not want to speculate as to what the results will be but anything at all would be beneficial. i have had at least 3 attacks min per year in the last 3 years so now i have been on beta for about 7 months,,only side effect is red blotches on abdomen shots only,,nothin on my thigh shots,,and head aches too,,which i have never ever had in my life. its like 7 months without an attack,,my bronchitis air intake problem has not been dxed,,as of yet,,its a mystery thing. so i feel for me that following my disease course with definite frequncy documentation over the last 3 years that going 7 months on beta,,my lat attack was january,,and nothjing since,,the beta seems to be helping stall any further attacks. now maybe this was my ms course,,but the last attack was severe bilateral transverse myelitis,,,,it was really bad. in canada,,betaseron is the only game in town now,,til we get avonex,,and rebif cleared for sale!!! also if you take part in the clinical trial,,they continue to give you the betaseron in canada forever,,for free!!!! i say i hope you get accepted,, best of luck !!! bob From alt.support.mult-sclerosis Tue Oct 8 13:53:06 1996 From: "Ross M. Greenberg" Date: Sat, 5 Oct 1996 08:56:00 EDT Newsgroups: alt.support.mult-sclerosis Subject: Peptide Vaccine? This looks pretty interesting.... ==== APn 09/30 1559 Multiple Sclerosis By MALCOLM RITTER AP Science Writer NEW YORK (AP) -- An experimental vaccine enabled multiple sclerosis patients to build up a police squad of blood cells to stop vandalism in their nervous systems, and that kept sufferers from getting sicker, a study found. Scientists tested the vaccine against a kind of MS that gets progressively worse over months or years. None of the six patients who built up police-like cells in the blood got worse during the yearlong study, while 10 of 17 other patients did. The study had so few patients that it couldn't prove the vaccine would be useful. But experts said the vaccine's effect on the immune system was encouraging. "It's not a universal treatment at this point and should not be considered so until we have evidence in a lot more patients," said the study's author, Arthur Vandenbark, of the Veterans Affairs Medical Center in Portland, Ore., and the Oregon Health Sciences University. About 300,000 Americans have MS. They have such symptoms as unusual tiredness, loss of balance and muscle coordination, slurred speech, tremors and difficulty walking. In severe cases, they are partly or completely paralyzed. The vaccine was tested against chronic-progressive MS, which accounts for about 15 percent of cases. Nobody knows what causes MS. But scientists do know that the immune system mistakenly attacks the protective sheath around nerves in the brain and spinal cord. That causes the symptoms. This vandalism is caused by certain blood cells called T cells, which gang up at the sites of destruction. People with MS naturally have some police-like T cells that can turn the vandalizing ones off, but not enough of them, Vandenbark said. So his vaccine was aimed at getting the immune system to churn out more of these police T cells. Patients got the vaccine or a placebo injected weekly for four weeks, then monthly for 10 months. Researchers tracked them for a year. The vaccine mimicked a piece of a protein carried by some vandal cells. When it was injected, the police cells noticed the sharp rise in the number of these telltale protein pieces. In response, the police cells multiplied. Five of nine patients who received one form of the vaccine showed a rise in their levels of policing T cells. A sixth patient showed the same result from another vaccine form. In contrast to most of the other patients, these six retained their abilities over the yearlong study in tests of walking speed and use of hands and arms. In four of the six patients, the number of vandal T cells in the blood dropped. The two others had low levels to start with. Abe Eastwood, director of the research and grants program at the National Multiple Sclerosis Society, called the vaccine "a very promising and interesting idea." But he said it's too soon to say whether it will be a useful treatment, since only six patients showed a response. RTw 09/30 1754 Experimental MS vaccine stabilizes some patients By Joanne Kenen WASHINGTON, Sept 30 (Reuter) - An experimental vaccine for multiple sclerosis (MS) appears to have halted or slowed the progressive neurological disease in about half the patients who took part in a small study, researchers said on Monday. The vaccine is designed as a therapy, not as a way of preventing MS. The hope is that if patients are treated early, the disease can be stopped in its tracks through a vaccine alone or through a vaccine combined with drugs. "What you are looking for is not turning back the clock but stopping things from getting worse," Dr. Dennis Bourdette, co-author of a research paper appearing in Tuesday's edition of the journal Nature Medicine, said in a telephone interview. Bourdette works at the Veterans Affairs Medical Centre in Portland, Oregon, and the MS Clinic at Oregon Health Sciences University. MS occurs when some cells in the immune system start attacking myelin, the insulation around nerve cells. In a year-long double-blind study, a synthesized peptide, or compound formed from amino acids, was tested on 23 patients with progressive MS. Only about half the patients injected with the peptide vaccine had an immunological response to it. The vaccine boosted the number of "good" immune cells in their blood and inhibited the disease-causing ones. And all six patients with an immunological response also had a clinical response -- their disease remained stable for a year.In contrast, 10 of the 17 people who did not have a response or who received a placebo got worse, according to clinical measurements. Whether the patients who did not respond to the vaccine would have if a different peptide had been used is not yet known. Biotech company Connective Therapeutics of Palo Alto, California, announced on Monday that it planned to conduct larger-scale, longer-term studies of the vaccine. About 250,000 people in the United States have MS. Two drugs have been approved to give partial control of the disease, and a third is near approval. None is a cure. MS usually strikes in young adulthood. About 60 percent of patients are women, and 40 percent men. Although the pace and pattern of the disease varies widely, many patients gradually lose muscle control. REUTER UPn 09/30 1738 UPI Science News WASHINGTON, Sept. 30 (UPI) -- An experimental vaccine to treat multiple sclerosis looks promising in a small test on humans, researchers said Monday. The so-called T-cell peptide-reactive vaccine does not prevent the disease but is designed to treat people who already have symptoms, said Dr. Arthur Vandenbark from the Veterans Affairs Medical Center in Portland, Ore. MS eats away the myelin sheaths around nerve cells, ruining the central nervous system of those with ms. The vaccine, in development for years, has passed another milestone: the first double-blind test on humans, in which neither the researcher nor the 23 volunteers knew who was getting a real vaccine and who was getting the placebo. After a year of tracking the patients, doctors discovered that the six people whose immune systems registered a response to the vaccine had remained in stable health. In contrast, the disease progressed in 10 out of the 17 people who either had not responded on an immunological level to the vaccine or had been taking the placebo. Vandenbark said he looked on "the small pilot trial as a proof of principle," showing that the general approach to the vaccine would work. He and colleagues announced their results in the journal Nature Medicine. The researchers are trying to reduce the body's population of rogue T-cells that attack and destroy the myelin sheaths. The vaccine seems to boost the population of another kind of T-cell that regulates the rogues. "They have looked at a novel way of treating autoimmune diseases," commented Stephen Reingold, vice-president of research and medicine at the National Multiple Sclerosis Society. He cautioned against overinterpreting such early work. Clinical results from just one year are difficult to interpret in a progressive disease like multiple sclerosis, he said, and he's looking forward to tests with more patients. However, he praised the approach for its potential in focusing treatment on parts of the immune system that malfunction in multiple sclerosis without disrupting other immune functions. "It's a promising step," Reingold said. The early version of the vaccine was indeed very focused, said Vandenbark and speculated that he may need to other components to broaden the effects to more patients. "A cocktail is where we're headed," he said. OTC 09/30 1752 Connective Therapeutics' Collaborator Reports ... PALO ALTO, CALIF. (Sept. 30) BUSINESS WIRE -Sept. 30, 1996--Connective Therapeutics, Inc. (NASDAQ:CNCT) announced today that results from Phase I/II clinical testing of T-cell Receptor (TCR) peptide vaccines for the treatment of multiple sclerosis will be published in the October 1996 issue of the journal Nature Medicine. The results from this pilot study indicated that patients who responded immunologically to TCR vaccines experienced stabilization of disease without side effects during one year of therapy. The Phase I/II physician-sponsored study was conducted by a team of scientists led by Connective's collaborator, Arthur A. Vandenbark, Ph.D. of Neuroimmunology Research, Veterans Affairs Medical Center, Portland and Oregon Health Sciences University. The double-blind, placebo-controlled trial involved 23 patients with chronic, progressive multiple sclerosis who were treated for 12 months with a native or substituted version of a V beta 5.2 TCR peptide vaccine or placebo. Successful peptide vaccination boosted protective T-cells and lowered pathogenic T-cells thought to cause the disease. "These promising early data support our decision to conduct additional studies in a larger population of progressive multiple sclerosis patients," said W. Scott Harkonen, M.D., senior vice president of Product Development and Operations at Connective. "We believe these clinical observations in multiple sclerosis generated by Dr. Vandenbark's group also serve as indications of the potential therapeutic value of TCR technology as a platform to develop vaccines for other autoimmune and connective tissue diseases." In the Phase I/II study, all TCR peptide vaccine responders (6/6) were clinically improved or stable, while only 7 of 17 non-responders were improved or stable. There were no responders in the placebo group. The vaccines were well-tolerated, with no evidence of adverse events attributable to TCR peptide treatment. Additional findings in the Nature Medicine report suggest that protective (regulatory) cells elicited by the vaccine not only inhibit their specific target pathogenic T-cells, but also inhibit "bystander" pathogenic T-cells in the area of inflammation in the nervous system. This information implies that the target T-cells need only represent a fraction of the total pathogenic population for the vaccine to be effective -- an important finding as multiple sclerosis is believed to be caused by a heterogeneic (mixed) population of T-cells. The publication of this data coincides with Connective's plans to submit an Investigational New Drug Application to conduct a Phase I/II study of native and substituted TCR V beta 5.2 peptide vaccines in progressive multiple sclerosis. The study will be a multicenter, double-blind, placebo-controlled trial which is expected to enroll 100 patients. Connective plans to compare the immunogenicity of the two vaccines against placebo. Dr. Vandenbark commented, "We are excited about the potential of TCR vaccines as therapies for multiple sclerosis and look forward to participating in Connective's upcoming trial. Boosting the body's natural immunity with vaccines such as these may provide long-term clinical benefit by arresting disease progression." As with other vaccines, the TCR technology is being developed to help the body recognize and destroy pathogens. In the case of autoimmune diseases, the pathogens are believed to be T-cells. TCR vaccines are manufactured from the receptor portion of pathogenic T-cells and injected into the patient to elicit a heightened immune response against the T-cells thought to cause autoimmune disease. Connective Therapeutics' TCR peptide vaccines are being designed to boost the naturally occurring control arm of the immune system believed to function inefficiently in immune-mediated diseases. These vaccines are expected to elicit a "regulatory immune response" that can immunize against the activity of disease-causing immune cells, possibly arresting the autoimmune disease process at its earliest stage. Connective Therapeutics, Inc., headquartered in Palo Alto, California, is focused on the development of novel therapeutics for serious connective tissue disorders. The company has four products in development: gamma interferon for atopic dermatitis and keloids; betamethasone mousse for scalp psoriasis and other scalp dermatoses; ConXn(TM) (recombinant human relaxin H2) for scleroderma and other fibrotic indications; and TCR peptide vaccines for rheumatoid arthritis and multiple sclerosis. Special Note: This news release contains forward-looking statements that involve risks and uncertainties that could cause actual results or events to differ materially from those in such forward-looking statements. Potential risks and uncertainties include, without limitation, those mentioned in Connective's prospectus dated January 31, 1996 under the heading "Risk Factors" and in Connective's Report on Form 10-Q for the quarter ended June 30, 1996 under the heading "Additional Factors That May Affect Future Results." --30--ap/sf CONTACT: Connective Therapeutics Inc. Sylvia Wheeler, 415/843-2857 KEYWORD: CALIFORNIA INDUSTRY KEYWORD: MEDICINE BIOTECHNOLOGY PHARMACEUTICAL REPEATS: New York 212-752-9600 or 800-221-2462; Boston 617-236-4266 or 800-225-2030; SF 415-986-4422 or 800-227-0845; LA 310-820-9473 Today's News On The Net - Business Wire's full file on the Internet with Hyperlinks to your home page. URL: http://www.businesswire.com Copyright 1996 UPn 09/30 1713 UPI Science News WASHINGTON, Sept. 30 (UPI) -- An experimental vaccine to treat multiple sclerosis looks promising in a small test on humans, researchers said Monday. The so-called T-cell peptide-reactive vaccine does not prevent the disease but is designed to treat people who already have symptoms, said Dr. Arthur Vandenbark from the Veterans Affairs Medical Center in Portland, Ore. MS eats away the myelin sheaths around nerve cells, ruining the central nervous system of those with ms. The vaccine, in development for years, has passed another milestone: the first double-blind test on humans, in which neither the researcher nor the 23 volunteers knew who was getting a real vaccine and who was getting the placebo. After a year of tracking the patients, doctors discovered that the six people whose immune systems registered a response to the vaccine had remained in stable health. In contrast, the disease progressed in 10 out of the 17 people who either had not responded on an immunological level to the vaccine or had been taking the placebo. Vandenbark said he looked on "the small pilot trial as a proof of principle," showing that the general approach to the vaccine would work. He and colleagues announced their results in the journal Nature Medicine. The researchers are trying to reduce the body's population of rogue T-cells that attack and destroy the myelin sheaths. The vaccine seems to boost the population of another kind of T-cell that regulates the rogues. "They have looked at a novel way of treating autoimmune diseases," commented Stephen Reingold, vice-president of research and medicine at the National Multiple Sclerosis Society. He cautioned against overinterpreting such early work. Clinical results from just one year are difficult to interpret in a progressive disease like multiple sclerosis, he said, and he's looking forward to tests with more patients. However, he praised the approach for its potential in focusing treatment on parts of the immune system that malfunction in multiple sclerosis without disrupting other immune functions. "It's a promising step," Reingold said. The early version of the vaccine was indeed very focused, said Vandenbark and speculated that he may need to other components to broaden the effects to more patients. "A cocktail is where we're headed," he said. - -- Ross M. Greenberg Virus Acres 914-586-1700 greenber@ramnet.com New Kingston, NY 12459 Fax: 914-586-2025 For info on RamNet: http://ramnet.net or send email to ramnet@ramnet.com From alt.support.mult-sclerosis Tue Oct 8 13:56:37 1996 From: erickson virginia p Date: Sat, 5 Oct 1996 20:45:29 -0500 Newsgroups: alt.support.mult-sclerosis Subject: avonex experience I have been on avonex for 6 weeks. I have found some good and some bad to it. On Monday, the day after the injection I have had severe headaches on 3 of the 5 day-afters. I have had no site reaction, I have found the mixing process and injections no more difficult than betaseron. One comment abou the mixing - make sure you mix it long enough so that no particles come to the top if it is let sit a bit after mixing. It is slightly harder to mix that betaseron. The good news is that I am tolerating avonex better than betaseron. I had extremely elevated liver function and low blood count blood test after only one month of 1/2 dose on betaseron. I stopped taking the drug and it took 6 months for my blood tests to become normal. My first 2 blood test with avonex have been normal. I keep hoping that the headachs go away soon. My Dr. has seggested that i pre-medicate all day on Sunday before I take the injection in the evening. I plan to try. Best of luck to everyone else who is trying avonex. Virginia Urbana, IL From alt.support.mult-sclerosis Mon Oct 14 12:13:01 1996 From: Jackie Ferguson Date: Sat, 12 Oct 1996 23:49:03 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Simon James Wiehe wrote: > > Hi, > > My father-in-law has progresive MS, and has just seen a new specialist, > one who specialised purely in MS. My father in law has been asked to go > on a trial for Cladribine. > > Has anyone seen or heard of this drug ? Does anyone know of this drug > under another name ? Does anyone know of any side effects ? Does anyone > know of its performance ?Is anyone else involved in the trial ? > > Your help will be appreciated. > > Simon > > -- > Simon James Wiehe **** Simon, RE: Cladribine trade name is 2CdA (2-chlorodeoxyadenosine. It is FDA approved for hairy cell leukemia and certain lymphomas. In fact, according to the oncologist who administered the drug to me, it CURES hairy cell leukemia!! It's a potent imunosuppressant. It specifically targets T lymphocytes, especially t-4 cells (and to a lesser extent t-8 cells). Since t-4 cells are considered one of the worst bad guys in MS, one can understand the rationale for trying it for MS. In the original study, done by the Scripps Institute in La Jo, CA.(and as reported in Lancet), there were about 30 patients who received the drug, with an equal number of controls (sorry, I don't remember the exact number). The patients who got the drug mostly stabilized or improved, while more of the controls deteriorated, with a few stabilizing. It was a small study, not well controlled, so a large multicentered study is underway. In the original study, all the patients got cladribine intravenously, one week/month for 4 months, I think. In the current trial, the patients are getting a more concentrated formulation and are getting it by the simpler, self-injectable subcutaneous route ... one week/month for 4 months. It's a 3 3 pronged study. Patients: 1/3 are controls -- get a placebo. 1/3 get low dose clad. 1/3 get high dose clad. Again one week/month for 4 months. This is a powerful drug. It suppresses the white blood cells, especially the neutrophils and t-cells. The patient has to be monitered very carefully with frequent blood counts. If it gets too low ... the treatment may have to be delayed ... and in some cases a "rescue" drug may have to be given to raise the blood count. To my knowledge, there have been no fatalities "yet" among MS patients who got this drug. In my case, I did get "profound neutropenia"on a few occasions. I had to take prophyllactic antibiotics, avoid other people and take other precautions to avoid infections. I was a sitting duck for a simple infection which could have raised havoc with my crippled immune system. Fortunately I'm fine now. The patient doesn't *feel* any side effects, as with other chemo drugs ... there is no nausea, vomiting, or hair loss. No malaise. Nothing! After the first treatment I had a mild headache -- which easily could have been due to stress! It was relieved by Tylenol. Never had any problems again. After my treatments (which took 1-2 hours) I went about my day. I and my neurologist both thought I stabilized. That was over a year ago. I'm still quite stabile. I've gotten to be a maven on exercise. And I owe my improvement to my exercises. My cladribine was ordered by a private neurologist in NYC ... I definitely got the drug ... was not part of a controlled study. I can get you more specific information .... the name of the pharmaceutical company, who to call for more information, etc. Just don't have it handy (it's in another part of the computer!) I'm happy I took the drug ... best wishes to you if you should decide to take it (best wishes no matter what). You can email me directly if you wish. 2 Jackie Ferguson, RN, MS jackferg@worldnet.att.net