From alt.support.mult-sclerosis Thu Mar 20 16:25:59 1997 From: MARK GUMKOWSKI Date: Mon, 10 Mar 1997 21:41:04 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Trial Results in NJ Status: O X-Status: Jackie Ferguson wrote: > > horowitz@admin.njit.edu wrote: > > > > I have news about the cladribine trial results. Apparently, they were > > inconclusive... > > Then LaVonne Nurphy wrote: ... Protocol was developed at Scripps > Clinic. They have not finished their testing there... None of the > drugs for MS is effective for everyone. > > I heard from 2 of our MS compatriots, from B.C., Canada ... that their > results showed that the experimental group and controls were the same. > > I spoke with one of the big MS guru's (one who orders clad.). He was > quite critical of the study design, esp. that they stopped after only a > year; they didn't adequately distinguish between those with with primary > cpms and those with secondary progressive MS. > > I took a series of Cladribine IV's last year, from August 1995 to > February 1996. I think it helped me. > > I'm profoundly disappointed that the study period wasn't longer or that > it wasn't better controlled. > > Jackie Ferguson, RN, MS (squared) Hi I just recieved my results today from the Cladribine study @ Yale 2-28-97. I was in the high dose group but like you said 'very disappointing results' was the consensus. My EDSS graphed over the study period was flat with no change at all (3.5 after 12 visits). I make a visit to Yale on 3-11 to see where I go from here. Bee venom therapy? Avonex? Continue for years on non-effective Cladribine? I would like to hear about the information you have gleaned from others regarding the study. By The way I'm very new to this newsgroup stuff. Please Respond. Take-Care Mark Gumkowski gumkowski@worldnet.att.net From alt.support.mult-sclerosis Sat Mar 22 12:13:10 1997 From: LaVonne Murphy Date: Wed, 19 Mar 1997 23:47:16 -0800 Newsgroups: alt.support.mult-sclerosis Subject: 4AP CAUTION!!! Status: O X-Status: Hi Gang Just learned something interesting about 4AP today. Please rethink using this drug! The study has been stopped again. They are unable to keep the medication stable once it is formulated. It is important that blood levels be checked OFTEN because there is a fine line of therapeutic dosage. IF THE MED BECOMES UNSTABLE AND THE DOSAGE EXCEEDS THAT LINE YOU *WILL* HAVE SEIZURES!!!! (Yep, if you are on this drug or considering it, I'm yelling at you.) MS clinics have been monitoring what happens with folks that are using this drug and they (across the country) are reporting high rates of folks coming into emergency rooms with seizures. It does not seem to matter where you get the drug, it can not be adequately stabelized. Folks who order in quantities for more than a couple of weeks are having more problems than others. A lot of the folks seen report getting the drug out of Texas somewhere. PLEASE CONSIDER, is it worth it??? L From alt.support.mult-sclerosis Mon Mar 24 10:57:36 1997 From: anand ivatury Date: Fri, 21 Mar 1997 06:16:41 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4AP CAUTION!!! Status: O X-Status: Kathy G. wrote: > > Yvonne, > Please give me more specifics on the information you got on 4AP. Where did > you read this? > Kathy G. I have been on 4-AP for 9months now, 5MG 3 times a day, and have had wonderful results, i have gained weight and more importantly, i can walk again, most off the time WITHOUT a cane. Not only that, because of the excellent results I have gotten, My insurance company is paying for the drug. I hope it works for every one else as well as it has worked for me. good luck anand ( coldspot@pipeline.com ) From alt.support.mult-sclerosis Mon Mar 24 10:58:10 1997 From: KYXE19A@prodigy.com (Pat Logan) Date: 23 Mar 1997 04:44:58 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: 4AP CAUTION!!! Status: O X-Status: I don't know how to reach the originator of this thread but it is only fair to say 4-AP has helped many of us with MS when nothing else has. I feel it is unkind to downplay something that pwms are getting help from. For example, betaseron may have made you deathly ill while it has helped someone else, or IV Sol, or IVIg, etc. I don't think we are here to proselatize (sp?) about the strengths/weaknesses of drugs for pwms...many of the drug companies pay millions to do that. What we do best is share our experiences. 4-AP gave me back a full point on the EDSS and continues to abolish fatique and allow much better stamina and use of upper body....so I can write this note....3 years of use later. And I'm not brain dead. Pat in Seattle From alt.support.mult-sclerosis Tue Mar 25 16:04:17 1997 From: gsh8@gholt.top.monad.net Date: Sun, 23 Mar 97 07:10:52 PDT Newsgroups: alt.support.mult-sclerosis Subject: Re: 4AP CAUTION!!! Status: O X-Status: A man that my husband works with swears by 4-AP and states that it gave him back his life!!!! He has the energy, after working all day, to now play with his kids. Who knows what the long term effects of any of our remedies will be, but if it gives you what you need for now, that is what counts. I have learned that everything in life is a 'trade-off':):):) You just need to weigh everything and become educated and informed! I personally would not take Betaseron, but I certainly do not fault those that choose to and am thrilled when I hear that it works for them and they can live comfortably with the side effects. Whatever floats your boat, eh? I took Symmetrel and it was a disaster for me...but Baclofen worked. For another, it is the opposite. I think that it is terrific that we can share both our positive and negative reactions for the benefit of others...just not push our conclusions off on others. I am so glad to hear that the 4-AP has worked so well for you, Pat! Karlyn > I don't know how to reach the originator of this thread but it is only > fair to say 4-AP has helped many of us with MS when nothing else has. I > feel it is unkind to downplay something that pwms are getting help from. > For example, betaseron may have made you deathly ill while it has helped > someone else, or IV Sol, or IVIg, etc. I don't think we are here to > proselatize (sp?) about the strengths/weaknesses of drugs for pwms...many > of the drug companies pay millions to do that. What we do best is share > our experiences. 4-AP gave me back a full point on the EDSS and > continues to abolish fatique and allow much better stamina and use of > upper body....so I can write this note....3 years of use later. And I'm > not brain dead. > > Pat in Seattle > > From alt.support.mult-sclerosis Tue Mar 25 16:08:07 1997 From: clybro@aol.com (Clybro) Date: 24 Mar 1997 04:11:14 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Marriage breakdown st Status: O X-Status: I got married to my husband 11 years ago and he had ms when we married. he was in alot better shape than now. i think that our relationship is a strong one also, but we almost didn't make it a couple of years ago. i had worked full-time and have a beautiful daughter almost in her teens, and was full-time caregiver when i'd get home from work, and had no help picking up or with any other house work during the day, my husband's disease has progressed to the point that he is unable to do chores, or even dress himself. i think something happened to me, i couldn't do it anymore. i lost my job, which was a blessing in disguise, and i wanted more than anything to run away from all the responsibility at home, so i actually left him for a couple of months, and only came for visits, no work. he hired personal assistants and that has eased alot of the burden. i come back home and started the tedious task of redefining my role as wife/mother vs. caregiver. i found i could not do both. when he'd fall i could not pick him up, it would reduse me to tears alot. finally after months i think that i have reorganized my feelings, and have come to the conclusion, that i want to be his wife still, and am able(emotionally) to handle dressing him, etc. on a part-time basis. things are finally settling down, and we love each other alot. the pain of watching someone you love fade away a little at a time sometimes is too much, then i remember it is him that is living it, & i'm only living around it. but i have a life too, and since i realized that we have been doing much better. it took alot for me to allow myself certain spaces. personal assistants are a drag to have around sometimes, and you almost have to take who you can get, but they are allowing our marriage to survive. here's sort of an aside, clyde (my husband) has had ms going on 25 years, he's almost 44, he was a musician and can still sing. he made a beautiful CD and it is for sale, if anyone would like one. his e-mail is CLYBRO@aol hope somebody got something out of my ramblings, i think it was healthy. thanks From alt.support.mult-sclerosis Wed Mar 26 16:50:56 1997 From: carneen@aol.com (Carneen) Date: 24 Mar 1997 23:20:02 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Should Chronic Progressive use Avonex? Status: O X-Status: I have CP MS and took Beta Seron for two years before switching to Avonex in August. My migrain headaches stopped when I began Beta Seron, but my MS been getting continually worse. I don't know if my decline would bave been swifter without the interferon.......that's the rub. I will continue to take Avonex until something better comes along. I am trying to get my insurance to pay for Cladribine. I love to hear from others with CP MS. Please email me at Carneen@aol.com alt.support.multi-sclerosis From alt.support.mult-sclerosis Sat Mar 29 11:16:30 1997 From: SHAZAM@mail.IDS.NET (Al Mangarelli) Date: Fri, 28 Mar 1997 01:16:23 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Cytoxan Status: O X-Status: Brigham & Womens Clinical MS Unit still uses Cytoxan as procedure in cpms in a modified form. Dr. David Hafler improved it's functionality and many patients in the uniit have been successfully using it for years now. many have not progressed. However it's still a prety heavy duty way to go. Al --- On Thu, 27 Mar 1997 18:50:35 GMT, cczimmer@mindspring.com (Carolyn C. Zimmer) wrote: >Jackie Ferguson wrote: > >>kenneth.quinn wrote: >>Well ... yes and no. I haven't actually read the latest studies, but I >>heard that Cytoxan proved to be no better than the controls. It was >>Howard Weiner, MD, the MS Guru from Boston who did a well known study @ >>15 years ago that showed promise for Cytoxan (an "old" cancer drug and >>powerful immunosuppressant) ... this was disproved by a study which I >>think was done in Canada. > >Cytoxan was the immunosupressant of choice a few years ago. They are >now using Immurex (or Immuran or something like that) more. Only for >the progressives (either CP or 2P). > >Z > >http://www.mindspring.com/~cczimmer/ >+------------------------------------------------------------------------+ >+ Carolyn C. Zimmer | "I've been warped by the rain, | >+ Duluth, GA | driven by the snow, I'm drunk and dirty, | >+ cczimmer@mindspring.com | don't you know, But I'm still...willin'" | >+ STANDARD DISCLAIMER | Lowell George | >+------------------------------------------------------------------------+ > From alt.support.mult-sclerosis Sun Mar 30 16:05:38 1997 From: watkinsksg@aol.com (Michael Watkins) Date: 29 Mar 1997 18:05:47 GMT Newsgroups: alt.support.mult-sclerosis Subject: Neurocrine Biosciences Phase I trial Status: O X-Status: Neurocrine Biosciences has completed a Phase I clinical trial of a compound known as NBI-5788 for treatment of MS. This trial was conducted in concert with Novartis Pharma AG. It involved 30 patients five medical centers in the United States and Canada. The focus of the Phase I study was on safety assessment, and an independent board recommended progression to Phase II studies of treatment effects for relapsing/remitting and CP MS patients. The RR trial is expected to begin in mid-1997 and the CP trial later in the year. *** Copyright -- Permission is granted to everyone to freely copy, post and otherwise reproduce this message so long as the entire message is copied To subscribe to the autoimmune_research e-mail distribution list, simply send an e-mail to michael_watkins@harvard.edu. If you come across any interesting information related to autoimmunity, please send it to the same address. From alt.support.mult-sclerosis Mon Mar 31 12:12:00 1997 From: LaVonne Murphy Date: Sat, 29 Mar 1997 19:31:25 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4AP CAUTION!!! Status: O X-Status: Pat Logan wrote: > > I don't know how to reach the originator of this thread but it is only > fair to say 4-AP has helped many of us with MS when nothing else has. I > feel it is unkind to downplay something that pwms are getting help from. (snip) What we do best is share > our experiences. 4-AP gave me back a full point on the EDSS and > continues to abolish fatique and allow much better stamina and use of > upper body....so I can write this note....3 years of use later. And I'm > not brain dead. Pat I'm sorry I did not answer this post earlier. Have been out of reach of my computer for a week or I would not have let you stew all this time. I did the original post. I know someone who is gathering info on 4AP and just reported what she told me. MS Clinics are reporting an increased number of people coming in to their emergency rooms with seizures because they have taken 4AP. Also, the study has been stopped again because the drug is unstable and increases in strength. This has been proven with lab testing of the drug that is out there. It had nothing to do with the drug company that made the drug for the study. The docs monitoring the study did it. Because they beleive this drug to be helpful and want to continue the study, they sent the drug company back to the drawingboard to find something to make the drug more stable. Nobody said anything about brain dead. I would like to add here, that if you are on the drug and have had good results, stay on the drug at the same dose and do not switch your source. The message was meant as a caution that should be looked at and not as a death sentence. L From alt.support.mult-sclerosis Wed Apr 2 10:29:36 1997 From: Ann Manasreh Date: Tue, 01 Apr 1997 09:01:48 -0700 Newsgroups: alt.support.mult-sclerosis Subject: Hu23F2G study Status: O X-Status: My neuro, Dr. Corrie Ford, is beginning the Hu23F2G study at the University of New Mexico. It's only a year long. It's divided up into 4 groups--2 levels of Hu23F2G, IVMP, and a placebo. He has the right to intervene with IVMP if it becomes necessary. The first week requires 2 lumbar puctures. I don't know if there are more of those to come. I don't know the other study site locations, but I can try to find out. No, I'm not participating. I had natural childbirth twice to avoid having my spine messed with. But I wanted to tell that other things happen in Albuquerque besides murders. From alt.support.mult-sclerosis Thu Apr 3 10:05:59 1997 From: Ann Manasreh Date: Tue, 01 Apr 1997 15:34:38 -0700 Newsgroups: alt.support.mult-sclerosis Subject: Re: Hu23F2G study Status: O X-Status: Sorry, I don't know the common name of this drug. And I'm quoting directly from Jean Sumption's International MS Support Foundation newsletter. ICOS (?) believes Hu23F2G may reduce the severity and length of acute MS exacerbations by preventing white blood cells' ability to bind to vascular endotheliun in the brain and spinal cord. They speculate this action will interfere with their mobility into these tissues. Should this happen, inflammation may resolve sooner and neurological damage may be reduced. This is Ann speaking: Since the drug does it's work in the spinal cord, this is the why of the lumbar puncture (aka spinal tap). Basically it seems to be a possible replacement for IVMP. Would it have similar side-effects? Is it a steroid? I don't know. But there are so many complaints and fears about IVMP, that it would be good to find a drug to replace it. Ann From alt.support.mult-sclerosis Sun Apr 6 21:02:07 1997 From: Gerald Gold Date: Fri, 4 Apr 1997 20:22:38 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Methotrexate Status: O X-Status: Bill McCartney wrote: > > A friend has just begun using Methotrexate. She is now in an > advanced state of MS and is wondering what to > expect. > > Anyone taking Methotrexate or familiar wi h the drug please respond. > > Benefits?, Side effects?, Dose?, etc. > > Thanks in advance, > > Bill - Levittown, NY > EMail Hotwheel@specdata.com > > ~|_ > (_)\_ Bill, I have been taking methotrexate for about one year and I supplement that with a monthly injection of vitamin B 12. I can still use my fingers but I seem to be gradually losing vat as well. Every month my blood levels are monitored. but I cannot definitely say that methotrexate has made a difference. Maybe . Gerry -- Gerald Gold Department of Anthropology York University North York, Ontario M3J 1P3, Canada From alt.support.mult-sclerosis Sun Apr 6 21:03:44 1997 From: jshore@eazy.net (Jeffrey Shore) Date: Sat, 05 Apr 97 10:58:29 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Methotrexate Status: O X-Status: In article <3344759C.5AD6@EriNet.com>, Paul/Joyce Eberl wrote: > ... The only "pain" is that I have to have bloodwork > done every 3 weeks to make sure that the methotrexate > isn't over-suppressing my immune system. Mmmmmm. I suppose it is possible some of your bloodwork is for that ... but the most common testing is done to ensure that liver functions are not being adversely impacted, and that the level of methx in your system is not too high. It is normally maintained at a significantly lower level than it would be, say, for someone on chemotherapy. The average half-life level can be kept too high (a greater probability of liver damage or reduced red blood cell production) whcich can occur if you are also taking something like salicylates. Aspirin or compounds that have the same effect block filtering done by the kidneys which in turn keeps the level too high. The three-week or generally frequent monitoring is also usually reduced gradually to quarterly bloodwork once your methx levels are stabilized though more frequent tests certainly don't hurt. FYI I was on methx (10 mg weekly) for 2.5 years with very nice results until it suddenly stopped having an effect. Fortunately Avonex had been approved for general usage a few months earlier so my docs shifted me to that after a 6-week "de-tox" to flush the remaining methx from my system. I've now been on Avonex for 6 months and it appears to be taking effect and without any apparent side-effects so far (except for this little green appendage that seems to be growing out of my forehead ....) Jeff Shore "The gimp with an attitude ...." :) jshore@eazy.net From alt.support.mult-sclerosis Tue Apr 8 18:02:19 1997 From: Jack Wilson Date: Sat, 05 Apr 1997 16:32:50 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Linomide cancelled Status: O X-Status: I was in the Linomide study. That large study was cancelled. Has anyone heard why? There were 600 in the study. To cancell it is a major event. I had a heart attack while on it. I wonder if others did also. From alt.support.mult-sclerosis Tue Apr 8 18:06:37 1997 From: Bertel Stenius Date: Sun, 06 Apr 1997 15:02:04 +0300 Newsgroups: alt.support.mult-sclerosis Subject: 5 M Man Aapo Status: O X-Status: Hi folks, Aapo Halko is a well-known member of our group and editor of the MS Web site that many of you read. It might be of interest to you that the last issue of Avain ("The Key"), the journal of the Finnish MS Society, carries a feature story about him: two pages, with one large picture and one small one. Aapo, 33, is introduced as "the man of the five M": (1) MS, (2) maths, (3) Mac (Macintosh computer), (4) music, and (5) me. M #1: Aapo had his first symptoms in 1979, but they were more or less dismissed as imaginary illness. In 1990 the disease got aggressive. In 1994 Aapo was offered an electrical wheel-chair, which he accepted. He never regretted the decision. M #2: That maths is Aapo's subject is known in this group since Aapo acquired his doctor's degree. He wrote his dissertation on a branch of the theory of sets. He is now a researcher at the University of Helsinki. M #3: The Mac is the vehicle with which Alpo travels the world. He thinks it's handicap friendly. A member of this support group since the year 1992, Aapo specializes in collecting scientific materials about MS for his Web site. The site has about 4000 visitors a month. M #4: Maths and music are generally close to each other, and so they are in Aapo's life as well. After having lost feel and dexterity Aapo exchanged the guitar for the electric piano, which, however, now runs the risk of being taken over by the daughters. M #5: Me? The author of the story says, rightly, that some of this "me" can be found between the lines by the one who knows to interpret in the right way what he or she reads, but alas, this note is just a minimalistic summary. You must content yourself with Aapo's postings and his Web site. Aapo is married to Heli, a psychologist, and has two daughters, Noona, 6, and Ida, 2. As I wrote in an article some time ago, Aapo was the one who pointed me in the direction of this support group. In Avain, I read an article which Aapo had written about MS and the Internet. He helped me on the phone with a technical problem, and well, here I am. Bertel in Helsinki From alt.support.mult-sclerosis Sat Apr 12 12:04:17 1997 From: costa@erg.sri.com Date: Fri, 11 Apr 1997 02:49:37 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: cladribine Status: O X-Status: "mcooper" wrote: >I'm taking cladribine and would like to write to anyone else who is or has >taken it. > Mel Cooper I've been taking it for 4 months. My dose is .07 mg./kg by subcutaneous injection once a day for five days. I repeat this every 4 weeks. I would have been due for my fifth cycle but my doctor decided against it based on my lymphocyte count. He said it was already low enough. I beleive the progression of my MS has slowed considerably since I began treatment. I may even have stabilized. I consider this notable considering the rate of progression in the year before I began treatment. So far I haven't noticed any obvious reversal or improvement in symptoms. But, if cladribine has indeed stabilized me and keeps me stable, it was well worth the expense and effort. I was taking methotrexate for 9 months prior to the cladriibine. As far a I could tell it was no help, I could easily see progression on a monthly basis. Prior to the methotrexate I was on BetaSeron for 2 years It seemed to slow the progression for a while. Whereas, the cladribine seems to be halting progression. Can you let me know more about your experiences. Ed Costa From alt.support.mult-sclerosis Sat Apr 12 20:26:13 1997 From: "hnspjotr" Date: 11 Apr 1997 17:41:47 GMT Newsgroups: alt.support.mult-sclerosis Subject: pray for my brother Status: O X-Status: Hello everybody, Right now, my brother is dying of MS. He's only 35 years old, and he had not yet lived his life in full. He is now very weak, and he has a starting pneumonia. He can't do anything by himself anymore, not even swallow, so we had to take him to a hospital. There we decided that it's no use to use medication against his pneumonia, because he has made clear some time ago that he doesn't want to continue living under these cicumstances. Now I know that there is a lot of people who can't deal with this, but it is the only way. We have to respect that choice. It is hard, so very hard to go to sleep at night knowing your brother is dying. My father has cried more these past few days then he has done in the rest of his life. So we wait for the inevitable thing to happen. We don't know when it will happen, but it will, and soon. So please pray for him. I'm not religious, but I'm praying untill my throat is sore. It's the positive thought behind a prayer that counts.. thank you, Hans-Peter hnspjotr@pi.net From alt.support.mult-sclerosis Tue Apr 15 11:59:03 1997 From: Carol Crandall Date: Sun, 13 Apr 1997 23:01:17 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Experience with Cytoxan and other Chemotherapy agents Status: O X-Status: I have had the experience of having Cytoxan. I was on Cytoxan for a period of 9 months. It was terrible. The only good thing about it was that I lost some weight that I needed to lose. I was sick at my stomach frequently while taking the Cytoxan. My veins have gotten so bad from all the blood drawn and all the blood taken for bloodwork that I actually have knots in the veins. I was so sick from the Cytoxan one month that they had to admit me to the hospital for three days. I couldn't even keep 7-Up down. I had dehydrated when they admitted me. I went through the hell of this drug for 9 months only to be finally taken off of it because it was not helping the MS at all. My heart definitely goes out to cancer patients who take a much higher dose than what I was given. I was really glad to get off of that "poison". I am still taking an oral chemo drug, Imuran, but it only has an occasional effect of making me slightly nauseated. It isn't anything that I can't handle. I wish you the best of luck. Carol Carol Crandall, ART, RRA ccrand01@mail.coin.missouri.edu From alt.support.mult-sclerosis Wed Apr 23 15:17:22 1997 From: ahalko@cc.helsinki.fi (Aapo Halko) Date: 22 Apr 1997 16:03:20 +0300 Newsgroups: alt.support.mult-sclerosis Subject: Oral myelin trial disappointment Status: O X-Status: Disappointing results from clinical trial of oral myelin for rrMS: http://www.nmss.org/msinfo/current_research/updates/RMP9717.html April 21, 1997 Disappointing results from clinical trial of oral myelin for relapsing-remitting MS _________________________________________________________________ On April 21, 1997, AutoImmune Inc. (Lexington, MA) released preliminary results from their two-year, phase III clinical trial of Myloral., a preparation of bovine (cow) myelin given orally (by mouth). Data indicate that there was no difference in frequency of relapses or progression of disability between those taking the drug and those who received the inactive placebo. Brain magnetic resonance images (MRI), taken at intervals throughout the trial from all participants, have not been completely analyzed. Safety data showed that the drug had no adverse effects. The clinical trial involved some 500 people with well-defined relapsing-remitting multiple sclerosis. More than half of these individuals in the study received daily doses of Myloral. the rest received an inactive placebo. The study was double-blinded so that neither the individuals in it, nor the physicians evaluating them, knew who received the active drug. Participants in the trial were assessed every three months throughout the study. This early information was released by the company to comply with Federal Securities and Exchange Commission regulations concerning information for investors in publicly held companies. Additional analysis of data will glean as much as possible from these disappointing results. ) 1997 The National Multiple Sclerosis Society checked: April 1997 -- 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 Apr 29 10:56:01 1997 From: Carol Crandall Date: Fri, 25 Apr 1997 16:21:55 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: IVIG Status: RO X-Status: Ann, I am not currently using immunoglobulin. The treatment course for it was 5 days inpatient IV IG initially and then once every other month on an outpatient basis for one year. The inital 5 days that I had the IVIG as an inpatient, I also was given 20 doses of IV SoluMedrol. I took the IVIG along with an oral chemotherapy drug, Imuran. I am still taking the Imuran. It has stabilized the progress to where I am not having exacerbations as frequently as I was. I still have them, but just not as frequent. It does not undo any damage that has previously occurred. I am thankful that I don't have the exacerbations as frequent as I was. I hope this has helped you. If you have any other questions, please feel free to ask. I will try to answer them for you, but you must remember that I am by no means an expert. Carol Carol Crandall, ART, RRA ccrand01@mail.coin.missouri.edu On Fri, 25 Apr 1997, Ann Manasreh wrote: > Hello Carol, > > I think I remember that you are using immunoglobin. How is that going? > We'd all love to hear about that. > > Ann > From alt.support.mult-sclerosis Fri May 2 19:28:05 1997 From: Paul Bruce Date: Tue, 29 Apr 1997 16:01:49 -0400 Newsgroups: alt.support.mult-sclerosis Subject: NewsFlash - Therapy Update from the AAN meeting in Boston Status: O X-Status: Everyone, This was posted by sumption@aspin.asu.edu Jean Sumption Director,msnews@aspin.asu.edu. Paul Bruce In a message dated 97-04-29 15:21:46 EDT, Jean Sumption wrote: << Subj: NewsFlash Date: 97-04-29 15:21:46 EDT From: sumption@aspin.asu.edu Sender: owner-msnews@aspin.asu.edu To: msnews@aspin.asu.edu Therapy Update from the AAN meeting in Boston. Boston, MA. This year's recipient of the prestigious Frank H. Netter Lecture, Barry G. W. Arnason, MD, told the audience at the Presidential Plenary Session that, after more than a century without an effective therapy for multiple sclerosis, neurologists now find themselves with three drugs that have recently been approved for the treatment of this demyelinating disease. Moreover, all three agents--Avonex, Betaseron, Copaxone--exert a beneficial effect on the attack frequency of multiple sclerosis. Allowing for differences in patient groups, study end points, and other parameters in the published pivotal trials, all three drugs reduce the relapse rate by about on third. However, sad Dr. Arnason of the University of Chicago, where he was chairman of the Neurology Department for 20 years and is currently the James Nelson and Anna Louise Raymond Professor of Neurology, "a 30% reduction in attack frequency, while substantial and highly significant, is nonetheless not good enough." Dr. Arnason noted that this may actually understate the efficacy of these treatments, since for Betaseron at least, the reduction in major attacks was 50% and there was a 60% reduction in the number of days patients spent experiencing attacks. Nevertheless, according to Dr. Arnason, there is a need to do better. Dr. Arnason suggested that one approach to better treatment might be combination therapy to potentiate the ability of interferon-beta to correct certain immune system abnormalities exhibited by patients with multiple sclerosis, such as decreased suppressor cell function, which is partially restored by Betaseron both in vitro and in vivo. One such co-agent to test would be transretinoic acid, an approved drug for the treatment of psoriasis, which has a different side effect profile than that of Betaseron. When combined with IFN-B in vitro, this agent synergistically potentiates the ability of IFN-B to augment suppressor cell function. Based on this synergism, Dr. Arnason's group is now combining transretinoic acid with Betaseron in a pilot clinical trial. Immune function in patients with multiple sclerosis before and after treatment with IFN-B was also the focus of four additional presentations, three of which dealt with neutralizing antibody (NAb) formation. Richard A. Rudick, MD, Cleveland Clinic Foundation, presented results obtained with a new method for detecting NAbs in patients treated with Avonex, some of whom had previously been treated with Betaseron. Using a cutoff titer of >20 to define NAb positivity, the incidence of NAbs against Avonex after 1 year in this open-label study was <10%, considerably lower than the rates in the published double-blind, phase III trial. However, at titers >20, NAbs persisted in serial serum samples 90% of the time if patients were continued on open label Avonex. Reanalysis of the phase III samples using the new immunoassay suggests a trend toward reduced clinical and MRI efficacy in patients with titers >20. Furthermore, Dr. Rudick reported that there was a significant reduction in NAb positivity when patients were switched from Betaseron to Avonex. However, Peter A. Calabresi, MD, National Institutes of Health, Bethesda, Maryland, then presented data showing that, with Betaseron, >50% of NAb-positive patients revert to negative while being maintained on Betaseron, and NAbs to Betaseron persisted in only 15% of patients. He believes that the correlation between the effectiveness of the treatment and the presence of antibodies was not clear-cut. Data presented by Joel J. F Oger, MD, University of British Columbia, Vancouver, British Columbia, suggest that there may be a biological difference between patients who form antibodies and those who do not. Those who form NAbs may have a more vigorous immune system, as demonstrated by high IgG secretion in the response to mitogen stimulation in vitro, and may be less responsive to current therapies. Another potential mechanism for treatment failure was presented by John H. Uhm, MD, University of Montreal, Montreal, Quebec, who discussed the role of tissue inhibitor of metalloproteinase in reducing T-cell migration. Commenting on these presentations, Donald W. Paty, MD, University of British Columbia, Vancouver, British Columbia, stated that although considerable data are being generated to suggest that NAbs have an effect on the ability to treat multiple sclerosis with the interferons, it is not a consistent effect. Some patients who form antibodies to IFN-B remain responsive to the drug, while some who do not form antibodies are unresponsive to IFN-B. Thus, Dr Paty believes, there are still many unanswered questions regarding the biologic effect of NAbs. From another clinician's point of view, Jack S. Burks, MD, Denver Colorado, believes that until there is further clarification of the conflicting data regarding responsiveness to therapy in both the presence and absence of NAbs, antibodies should not be the single factor that determines whether a patient's therapy should be continued or switched. Patients doing poorly should have their medication switched even in the absence of NAbs, but if they are doing well they should be continued on the same medication. After all, said Dr. Burks, neurologists "must treat the patient, not the antibody." Although antibodies and other mechanisms leading to treatment failure remain debatable issues, the focus of the experts at the meeting was on the now established value of the three approved agents for the therapy of relapsing forms of multiple sclerosis. Yours in hope and good thoughts, Jean Sumption Director Smile and Warm the World __________________________ >> From alt.support.mult-sclerosis Mon May 5 13:08:36 1997 From: langs006@maroon.tc.umn.edu (Dave Langsdale) Date: Sun, 04 May 1997 09:06:31 GMT Newsgroups: alt.support.mult-sclerosis Subject: Methotrexate Status: O X-Status: After 22 years of cpms, my current va Dr has decided that I should start on Methotrexate at 2.5 mg 3 times per week. My question: I'm already full time elec w/c with use of only one hand...and manage my life quite nicely with the help of my wife. ...the absolute last thing I need to further complicate my life is diarhea . Is this a real problem with this med? Dave From alt.support.mult-sclerosis Sat May 10 22:42:16 1997 From: Elizabeth Cook Date: Tue, 6 May 1997 21:05:13 -0400 Newsgroups: alt.support.mult-sclerosis Subject: 1997 NMSS Teleconference Status: O X-Status: I attended the 1977 MS teleconference on MS Treatment.I was pleased to hear the most recent evaluations of Linomide, Myloral, Leustatin, and sulfosalazine. Linomide was withdarwn from clinical trials. It was associated with serositis and recently myocardial infarction (heart attack) occurence, oral myelin was ineffective, leustatin (cladribin) bit the dust also. My mind wandered as something was said about methotrexate. The presentor was JS Wolinsky,MD and Emily Cerretta MSN. There are different presentors as the show appears in different areas of the US. This one seemed to be broadcast to mostly Eastern sites. Hope this helps inform. From alt.support.mult-sclerosis Sun May 11 17:40:49 1997 From: chanteline@aol.com (Chanteline) Date: 8 May 1997 21:10:49 GMT Newsgroups: alt.support.mult-sclerosis Subject: New drug offers hope for ms patients -- 4-aminopyridine Status: O X-Status: A study of 10 ms patients suggests that the drug 4-aminopyridine can improve walking speed, enable better grip strength and heightened overall strength. The exciting part of the research results is that the drug improves the most disabling symptoms for ms patients. Dr. Steven Schwid, University of Rochester, was a co-author of the report. Paul Bruce Paul From IL USA chanteline@aol.com From alt.support.mult-sclerosis Mon May 12 13:34:03 1997 From: steve@tropheus.demon.co.uk (Stephen Wolstenholme) Date: Sat, 10 May 1997 16:38:33 GMT Newsgroups: alt.support.mult-sclerosis Subject: My worst and best foods. Status: O X-Status: I've now been analysing how foods, drinks and supplements interact with my MS symptoms for 290 days. I think it's about time the I posted the worst and best items. We may be able to identify some items in common. I've only included the items that stay at the extremes of my food score lists. Worst 20 items. Worst first: corn oil, chilli, sweet peppers, ginkgo biloba, iron tablets, margarine, garlic, sweet pickle, celery, paprika, vinegar, rye, lettuce, salt, Trocomare, decaf coffee, bread, Guarana, lime pickle, hazel nuts. Best 20 items. Best first: onion, Anadin Extra, potato cake, potato salad, whiskey, cole slaw, grapeseed oil, yogurt, apple, brazil nuts, mushrooms, pasta, cinnamon, Rice Dream, Naudicelle Plus, soya oil, vit B complex, grapes, tea, safflower oil. Steve -------------------------------------------------------- Stephen Wolstenholme: Author of Neural Network Shareware Neural Planner - Windows neural network system NeuroDiet - Windows 95 health and diet planner web page: http://www.tropheus.demon.co.uk From alt.support.mult-sclerosis Fri May 16 11:26:34 1997 From: Chanoch Weil Date: Thu, 8 May 1997 14:17:54 +0300 Newsgroups: alt.support.mult-sclerosis Subject: Voice recognition software Status: O X-Status: The following article is by Bruce Couper: ~Date: Fri, 2 May 1997 16:29:29 -0400 ~From: Bruce Couper ~Reply-To: MS Canada List To: MS Canada List ~Subject: MSC: Finally - that article I promised on voice input Hi folks I'm finally getting around to that article on the voice-recognition system I'm using, Kurzweil VoicePad Pro. Everything seems to be taking longer these days. I know there are messages on the list I should be responding to, but today this has priority. Background: The explosive growth of the Internet has opened a new world for many folks with MS and others isolated by disease and disability. As wonderful as this is, the very tools for its use can be an impediment or barrier for some of us. There are always solutions, of course -- some examples are larger screens or voice output for folks with limited or no vision and enhanced keyboards or voice input for folks who find it difficult for impossible to use a standard keyboard. Some solutions, such as "sticky-key" programs or settings are simple and free. Others, such as very large displays and voice input can be quite expensive, though various provincial assistance programs may help. The solution I'll write about here is one which is very reasonably priced and might meet the needs of those of us who can still use a mouse (or trackball) and/or keyboard to a very limited degree, but who might benefit from voice input for writing. Please note that the software I will mention are the "lite" or least expensive versions. The "full" versions do very much more, at much greater cost. For example, Dragon Systems has a new product which is supposed to allow natural, continuous speech, without the short pauses required by other systems. It and the more powerful versions of voice-recognition software from other companies also allow dictation into any application and control of the Windows environment (such as menus, dialogue boxes etc..). The Important Bits: I'm "writing" this with Kurzweil VoicePad Pro, a voice-recognition word processor that allows me to write anything and everything without touching a key. I speak and the words appear on the screen at a rate that's many times faster than my last few years keying with one finger; at least as fast, in fact, as I could type when I was young and a fairly quick touch-typist. Voice-recognition software has been available for a few years now, getting better as both the software improved and computers became more powerful. Some of us have watched, wishing we could afford both the software and hardware. Then, some of us have slowly acquired faster hardware but have balked at the high cost of the software, often in the $800 to $1000+ range. If, like me, you can still use a mouse or trackball and keyboard to at least the limited degree necessary to run programs, manage files etc. and really only need or want voice input for writing things like email, or want a simpler and less expensive step before buying "full" voice-recognition software that does almost everything, then read on. I've been looking at voice input for some time, even going to a friend's house to try his. I've seen the excellent DragonDictate and IBM VoiceType for Windows 95. Both work well (with DragonDictate being the more popular, I believe, and seeming to have more complete control over the Windows environment, against IBM's impressive context-sensitive recognition), but both are far more expensive than I can afford. Provincial assistance programs are great, but the waiting list is long. I found an alternative. Kurzweil VoicePad Pro does everything I currently need and does it very well at a Canadian price of $119 (when I bought mine). Much more attractive. Not only that, I was able to download a demo version to try out. While recognition accuracy is at best abysmal without a high-quality microphone, the demo shows well how the software works. I ordered the commercial version from a Canadian supplier. Additionally, if I do decide to upgrade to their more expensive version which works with other software, I can do so at a savings and in any case their more expensive product is in the range of half the price of their competitors. I don't feel qualified to compare the various products now available. Both IBM and Dragon Systems have "lite" versions available, priced close to Kurzweil VoicePad Pro. My guess is that it's a matter of personal preference. Certainly, one can use a search engine to check Usenet messages people are writing about those products. I can tell you that the IBM product, VoiceType Simply Speaking, like the Kurzweil product, operates within its own Wordpad-like word processor. As I understand it, the Dragon Systems products, called I think, "Singles", operate with specific applications. I find the Kurzweil product very easy and intuitive to use. Rather than try to explain precisely how it works, though, I'll leave it to anyone interested to try the demo version or email me questions. Instead, I'll give you an example of my using it, and I'll add some things I think folks should consider before buying. I start by first running VoicePad Pro. It takes a few moments to start, after which I just leave it in the background. When I've read an email message I wish to respond to, in my email program, I click the reply button which then displays the original message in quoted form. I right-click on the message body and click Select All from the popup menu, then right-click and select Cut, cutting the text to the clipboard. I then switch to VoicePad Pro and paste the quoted message there. The rest is done just as we all do, except by voice input rather than using the keyboard. When the message is completed, I say "cut-all" which executes a command I've created in VoicePad Pro which cuts all the text of the reply to the clipboard and shrinks the size of the VoicePad Pro window. I then right-click on the exposed part of my original mail program reply window and click Paste. Done. It's not quite as convenient as dictating directly into the original application, but the extra steps make only a few moments. Those Considerations: Accuracy -- The various products claim 90% accuracy, initially, with final accuracy of 97% or better after extended use or "enrollment". I've found this to be a tad optimistic with VoicePad Pro, but good, only when I'm well-rested and quite alert. I can speak quite clearly under those conditions, but as MS fatigue sets in, my volume drops out and I become less careful, more apt to not leave the sight pause required between words and less consistent in my enunciation. Therefore, I would suggest that folks need to be able to speak fairly clearly and quite consistently. Since MS sometimes affects the clarity of speech, this can be a very real problem. Hardware requirements -- While Kurzweil VoicePad Pro claims it will run on a 486-75, under Windows 3.1x, I rather expect that all available products are more realistically run on a Pentium-class computer under Windows 95. My other guess is that 16 megabytes of RAM would be a realistic minimum for reasonable speed. You also need a compatible sound card (it looks like they all work with a broad range, with Sound Blaster 16 being the standard). Which is "best" -- I don't know. As I suggested earlier, it's probably a matter of personal preference. However, IBM does offer to accept product returns within a specified time. I don't know that they'd care for my suggesting this, but since the very same microphone is included with both IBM VoiceType Simply Speaking and Kurzweil VoicePad Pro, if one purchased the IBM product and had any doubt about its appropriateness, one could try the demo of the Kurzweil product and at least compare them. I'm sorry, but I don't know the return policies, if there are any, for either Kurzweil products or Dragon Systems products. You might want to ask. A personal observation -- I've been doing this for some time, now, and am finally comfortable with it; "comfortable", not in the sense of being able to use this software, of being able to dictate words which appear on the screen, but comfortable in another way I hadn't anticipated before starting. I've spent a good many years "typing", then keying, my thoughts. When word-processors arrived, editing became easy and words thrown out too carelessly could easily be rearranged. Talking into a microphone was suddenly very different. I can't tell you why, I can just tell you that, aside from the time it took to learn to use this, it took quite a while to feel comfortable dictating. Different brain pathways? Finally -- There it is, folks. I probably wouldn't thrill any of the three companies I mentioned, but I did promise to attempt some article on my experiences with voice input and this is at least a lengthy beginning. I'll add links to the three companies I mentioned and I urge anyone interested to check out all three (there may be others I've not seem that are worth considering). There are doubtless considerations I've not thought of and advantages some have of which I'm unaware. Also, Gerry Gold might comment on his use of the version of VoiceType that comes with IBM OS/2, as might Don Harber on the Windows version of that software. Please email any questions you have about my use of Kurzweil VoicePad Pro, or if you think others would really be interested, post to the list with a cc to me to ensure I see it immediately. And do tell me if there is more about this that you'd like written here. Take care all Bruce Couper, in Oshawa, Ontario, Canada ===================================== Kurzweil http://www.kurzweil.com/ IBM VoiceType Simply Speaking http://www.software.ibm.com/is/voicetype/simply-speaking/usa/speaktxt.html Dragon Systems http://www.dragonsys.com/ From alt.support.mult-sclerosis Sat May 17 15:06:31 1997 From: 2 Bells Date: Sat, 10 May 1997 23:39:19 -0700 Newsgroups: alt.support.mult-sclerosis Subject: Re: Methotrexate Status: O X-Status: I have been on Methotrexate since last fall. I take 10mg once a week (upped from 7.5 in April). I have had absoulutly no side effects. Am feeling stronger and more alert. If you had limited use of your hands you may want to consider the fact that methotrexate has shown to be more effectibe on CP MS and more effective on symptoms of upper extremities. It is certainly worth a try. After all, you can quit if you feel it is not worth taking. Good Luck Janet From alt.support.mult-sclerosis Sat May 17 15:09:38 1997 From: Kathy G Date: Sun, 11 May 1997 08:34:26 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4-AP, Methotrexate Status: O X-Status: In a message dated 97-05-10 13:12:18 EDT, you write: << My husband was asked today while at the Mellen Center/Cleveland to consider using 4-AP. We would like to get some feedback. He has also been on methotrexate for 32 months and is considered to be doing well on it. I would like to have information pertaining to side effects, and what pharmacies are being used, the price range for the drug as we are on Medicare with no payment for drugs. Thanks >> I have taken 4AP for over two years and found it to be a wonderful help. I have read that is especially effective for people who are temperature sensitive. Here is the information provided to me by the Shepherd Center Apothecary in Atlanta, GA. (phone 404-350-7743) but I suggest that your neuro contact a doctor at the Shepherd MS Center, to get more information on their success with this drug. 4-Aminopyridine (4AP) Description: 4-AP is a chemical that has shown the ability to restore nerve conduction in demyelinated nerve fibers by prolongation of the repolarization phase of the action potential. It is classified as a potassium (K+) channel blocker. It has been prescribed for fatigue and heat sensitivity associated with multiple sclerosis. Availability: 4-AP is not available commercially in the United States. It is not manufactured by any drug company in the United States. It is considered an orphan drug by the FDA. It is compounded by the Shepherd Center Apothecary and dispensed only upon perscription. Formulation: 4-AP is compounded in a slow release formulation of Methocel E4M. This formulation enables the drug to be released over an 8-12 hour period. The most serious side effect has been seizures, but also include burning, numbnedss,dizziness, light headedness, walking instability, nausea, vomiting, restlessness and anxiety, abdominal pain, constipation, and headache. Hope this helps. I have had no side effects with this drug. Kathy G. From alt.support.mult-sclerosis Sat May 17 15:11:07 1997 From: Kathy G Date: Sun, 11 May 1997 08:56:08 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4-AP, Methotrexate Status: O X-Status: In a message dated 97-05-11 07:56:14 EDT, you write: << Cost should be the least of your worries re. 4-AP. There are many folks on it who are in this group. Listen carefully to what they say about where to get the drug and make sure they have been using the drug for some time before you use their pharmacy. I understand there is one in Texas somewhere with a good reputation. The study on 4-AP has been halted until the researchers can find a way to make the drug stable. It seems to increase strength with time and the MS clinics around the country have been reporting an increase of people on 4-AP coming in to their emergency rooms with seizure activity. These folks are getting the drug from different sources. So, when you buy the drug, be sure the folks that recommend the source have used it for a while and buy only a month or two supply at a time. I have had correspondence with several from this group that have been on 4-AP for more than a year and have had no problem and feel it benefits them. Sorry, don't have names to give you. If I recall right, they were also taking the drug in the lower or mid recommended range too. Talk carefully with these folks. Your post was a little vague on whether or not your doc has much experience with the drug. Seems that he should have been able to give you a good, secure source if he had lots of experience. L >>