Question:
hi guys and thanks up front to anyone who responds….here’s the scoop. i have had ms now for 6 years or so and never had much of a problem with it…tired, tingly, limpy …but whatever..never got in the way of my lifestyle. I took medrol when it was first discovered for 10 days and it seemed to help me. I remember feeling like i was run over by a truck while on the steroids but it being such a short time it was easily forgotten….since then i havent taken drugs…i hate medication! this past month i was in the midst of aggravating symptoms…falling over, pain in my legs, blahblah…and got mad.. agreed to take another blast….4 days of decadron now 8 weeks of prednisone…i was spose to start the copaxone yesterday (2 weeks into all these steroids) and wimped out…i feel so kooky on the medication…though better each day.BUT not like i am my normal self…..i havent talked to my doc but got the sense from the ms/copaxone nurse that i should start when im on steroids……i dont want to! is that normal? i am assuming the prednisone will take care of the flare up and then when i am my old self i’ll start the needles….what do you think? am i making a mistake? do most people start copaxone while on steroids? its hard to decide for me whats worse..ms or the treatment for ms…..again, thanks, cyndee
Response:
Hi Cyndee, I would call my doc and ask this question. But you know the Copaxone and steroids are different medicines and the effect is different for each. I started my Avonex yesterday and I am in the middle of an exacerbation. Hasn’t made me feel much worse. Check it out with your doc and then decide. good luck! | /| —- —– | / | | | | | ~~~~~~~~BECK~~~~~~~~ | | | | | | "Faith ends where worry begins" | | —- —-
Response:
Hi Beck, was just curious how it went with your first Avonex shot? Was it less scary than you thought? I hope so. Take care, Lili BMOO2U ha scritto nel messaggio <19990413182714.06175.00000…@ng-fw1.aol.com>… – Hide quoted text — Show quoted text ->Hi Cyndee, > snip < >I started my Avonex yesterday and I am in the middle of an exacerbation. Hasn’t >made me feel much worse. Check it out with your doc and then decide. good >luck! >| /| —- —– >| / | | | | | ~~~~~~~~BECK~~~~~~~~ >| | | | | | "Faith ends where worry begins" >| | —- —-
Response:
Hi Lili!! It WAS less scary than I thought! It really went well and I only had some muscle aches!! I hope that is ALL I get with it! Thank you for remembering me! | /| —- —– | / | | | | | ~~~~~~~~BECK~~~~~~~~ | | | | | | "Faith ends where worry begins" | | —- —-
Response:
Get off the steroids and forget the needles. Until a doctor can say what the exact cause of MS is, I would and DO refuse treatment. The doctors don’t know what they are doing. It’s like taking Pepto Bismal for a cold. Hang in there.
Response:
dear "cleodemko" (assuming you are the actuall poster) amazing! finally someone who speaks with certainty! not only that but you refute with erring authority nearly every patient and researcher not to mention the MS society and the neuro’s who have spent their lives treating us. i think your certainty is uhhhh well unique. may i ask what you’ve founded this mighty missive on?! ’cause unless you’ve got a passle ‘o’ studies showing how untreated folks fare better than treated folks i’d have to say (heaven forefend) yer fulla shit… to the original poster. run. don’t walk to the neares doc with real experience of MS! better yet find a few and get several opinions. it’s your ass my freind. i don’t generaly like neuro’s much but they are a hell of a lot better than nothing! get treatment. steroids may or may not help. but your odds are a lot better with one of the ABC’s than without. don’t wait till you’ve lost function. the objective here is NOT to lose function and copaxone actually slows progression. ie; delays loss of function. cheers ed cleode…@aol.com (Cleodemko) writes: >Get off the steroids and forget the needles. Until a doctor can say what the >exact cause of MS is, I would and DO refuse treatment. The doctors don’t know >what they are doing. It’s like taking Pepto Bismal for a cold. Hang in there.
– ———————————————————————– "The whole business of his life was in the plunder of his gaze…"
Response:
I don’t think they know exactly what they’re doing with these drugs either. I’ve had the cortisone 5 times. It has helped, but I sometimes wonder if its benefits are worth it. As far as the ABC drugs are concerned I’ve been on the Beta three times each time for three months only. The last two times it gave me a relapse. I don’t think their studies of these drugs are comprehensive enough. In effect the jury is still "out". As with most drugs the true benefit/adverse effects wont be known for decades. Until then I would be wary of anyone who emphatically professes to know anything about them. You take them at your own risk. – Hide quoted text — Show quoted text -Cleodemko wrote in message <19990414195547.25713.00000…@ng30.aol.com>… >Get off the steroids and forget the needles. Until a doctor can say what the >exact cause of MS is, I would and DO refuse treatment. The doctors don’t know >what they are doing. It’s like taking Pepto Bismal for a cold. Hang in there.
Response:
another from the peanut tgallery. jury has been "in" for a long time now. how EXACTLY do you know it was the interferon that caused your relapse?! ’cause unless you have some means of knowing this that’s new to the world, you can’t be sure. if you are one of those who really do have problems with interferons then copaxone migt make sense for you. and what were you taking cortisone for?! have you got a rash? if you have MS then prednisone or methylprednisolone are used to treat what you are calling "relapses." docs don’t know "exactly" what they’re doin with MS. the good ones will admit that. but they aren’t advising folks to avoid treatments that can help them lead meaningful lives. which makes ‘em a lot better than you… i "emphaticaly" profess to know SOMETHING (to paraphrase you) about the ABC’s. that’s that they do help reduce flare ups and seem to slow progression in many cases. there may be arguments for not using them. but not those you site. and for those of us using them, and that’s most of us. they are a godsend. i suggest you learn a bit more before you hand out more damaging advice in ignorance. FYI; i don’t use steroids anymore. and would only use them now in the most pressing circumstance. while some may be too quick to reach for them, in the right situation they are helpful. ed – Hide quoted text — Show quoted text -"enzo" <e…@wantree.com.au> writes: >I don’t think they know exactly what they’re doing with these drugs either. >I’ve had the cortisone 5 times. It has helped, but I sometimes wonder if its >benefits are worth it. As far as the ABC drugs are concerned I’ve been on >the Beta three times each time for three months only. The last two times it >gave me a relapse. I don’t think their studies of these drugs are >comprehensive enough. In effect the jury is still "out". As with most drugs >the true benefit/adverse effects wont be known for decades. Until then I >would be wary of anyone who emphatically professes to know anything about >them. You take them at your own risk. >Cleodemko wrote in message <19990414195547.25713.00000…@ng30.aol.com>… >>Get off the steroids and forget the needles. Until a doctor can say what >the >>exact cause of MS is, I would and DO refuse treatment. The doctors don’t >know >>what they are doing. It’s like taking Pepto Bismal for a cold. Hang in >there.
– ———————————————————————– "The whole business of his life was in the plunder of his gaze…"
Response:
I don’t notice anything with my copaxone as I do it at night. Joyce "jan g" <gillett…@hotmail.com> wrote in message
news:9loi4f$18k8$1@msunews.cl.msu.edu… – Hide quoted text — Show quoted text -> hi ed, > I’m done with the Medrol- have been for about two weeks. but I’m thinking > that the steroids have temporarily changed the way that copaxone affects me. > like maybe the medrol suppressed my immune system for now and the copaxone > reactivates. > I’ve thought about shortening the length of time between copaxone shots, and > maybe I’ll do that when the MS gets active again. > it is funny how different individuals have such varied reactions to meds. > steroids have always put me into remission. and I recover recently lost > functioning. ( I have a friend who gets much much worse with steroids. but > sheryl’s MS has been nasty, anyway. she was one of the first on betaseron > and thought that it helped (tho I didn’t see it)- but now she’s on > novatrone.) anyway, as I’ve said long ago, betaseron was a dreadful > experience for me, and it took me a year to recover from it. still, I’m > ready to give whatever new treatment that comes along a try. not always > better living through chemistry- but ……. > jan g > PS told my doc about how copaxone affects me- the improvement post shot. he > didn’t think that odd- but said that insurance wouldn’t pay for extra shots. > he said that some of his patients with long term MS with chronic disability > had shown amazing improvements with the copax. > "ed hill" <eh…@world.std.com> wrote in message > news:GIB5LA.DHy@world.std.com… > > hi jan > > "jan g" <gillett…@hotmail.com> writes: > > >I take copaxone, and have noticed improved functioning about 7 to 12 > hours > > >or so after the shot. and I know that Copaxone isn’t supposed to work > like > > >that. > > copaxone does the same for me. and it wears down at about 18-20 hours > > after the shot. i generally feek great mid cycly and pretty crappy just > > before the shot. > > but anyway, just finished a brief course of oral steroids with good > > >result- but now, the shots seem to make the MS symptoms worse during > about > > >the same times they used to make me feel better. thinking about quitting > > >copaxone for now, or spacing the shots further apart, to see what > happens. > > your choice but between the two i’d drop the ‘roids. > > matter of fact i have dropped the ‘roids. i actually take copaxone every > > 12 hours or so when i’m sick or feel an attack coming. > > doing this has worked well for me no adverse effects i or my doc can find > > and it means not having to trash myself with ‘roids. > > look up PTSD and hypercortisalemia on medline. > > cortisal is the original GC ‘roid made by your body. the stuff yer taking > > is an exact copy but at much higher doses than your body produces. > > > get tired of trying to figure out what to do to get my body to function > > >better. it’s almost like some stupid hobby that I wish I could quit. or > > >some neverending amateur science project. sick of trying to make my > body > > >"happy". just wish that I could take it for granted, like in the good > old > > >days. > > >jan g > > you have a lot of company in that. > > best regards > > ed > > — > > ———————————————————————– > > "The whole business of his life was in the plunder of his gaze…" > > Daniel Halevy on Degas > > | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |
Response:
hi joyce. i generally take it when i get up to take advantage of the several "good" hours it gives me. when i’m having a bad period i take a second shot 12 hours later and that cuts the symptoms quite a bit. when i’m really getting hit i have some apnea and that’s handled well by that second shot. "Joyce" <j.chil…@home.com> writes: >I don’t notice anything with my copaxone as I do it at night. >Joyce
best regards ed – Hide quoted text — Show quoted text ->"jan g" <gillett…@hotmail.com> wrote in message >news:9loi4f$18k8$1@msunews.cl.msu.edu… >> hi ed, >> I’m done with the Medrol- have been for about two weeks. but I’m thinking >> that the steroids have temporarily changed the way that copaxone affects >me. >> like maybe the medrol suppressed my immune system for now and the >copaxone >> reactivates. >> I’ve thought about shortening the length of time between copaxone shots, >and >> maybe I’ll do that when the MS gets active again. >> it is funny how different individuals have such varied reactions to meds. >> steroids have always put me into remission. and I recover recently lost >> functioning. ( I have a friend who gets much much worse with steroids. >but >> sheryl’s MS has been nasty, anyway. she was one of the first on betaseron >> and thought that it helped (tho I didn’t see it)- but now she’s on >> novatrone.) anyway, as I’ve said long ago, betaseron was a dreadful >> experience for me, and it took me a year to recover from it. still, I’m >> ready to give whatever new treatment that comes along a try. not always >> better living through chemistry- but ……. >> jan g >> PS told my doc about how copaxone affects me- the improvement post shot. >he >> didn’t think that odd- but said that insurance wouldn’t pay for extra >shots. >> he said that some of his patients with long term MS with chronic >disability >> had shown amazing improvements with the copax. >> "ed hill" <eh…@world.std.com> wrote in message >> news:GIB5LA.DHy@world.std.com… >> > hi jan >> > "jan g" <gillett…@hotmail.com> writes: >> > >I take copaxone, and have noticed improved functioning about 7 to 12 >> hours >> > >or so after the shot. and I know that Copaxone isn’t supposed to work >> like >> > >that. >> > copaxone does the same for me. and it wears down at about 18-20 hours >> > after the shot. i generally feek great mid cycly and pretty crappy just >> > before the shot. >> > but anyway, just finished a brief course of oral steroids with good >> > >result- but now, the shots seem to make the MS symptoms worse during >> about >> > >the same times they used to make me feel better. thinking about >quitting >> > >copaxone for now, or spacing the shots further apart, to see what >> happens. >> > your choice but between the two i’d drop the ‘roids. >> > matter of fact i have dropped the ‘roids. i actually take copaxone >every >> > 12 hours or so when i’m sick or feel an attack coming. >> > doing this has worked well for me no adverse effects i or my doc can >find >> > and it means not having to trash myself with ‘roids. >> > look up PTSD and hypercortisalemia on medline. >> > cortisal is the original GC ‘roid made by your body. the stuff yer >taking >> > is an exact copy but at much higher doses than your body produces. >> > > get tired of trying to figure out what to do to get my body to >function >> > >better. it’s almost like some stupid hobby that I wish I could quit. >or >> > >some neverending amateur science project. sick of trying to make my >> body >> > >"happy". just wish that I could take it for granted, like in the good >> old >> > >days. >> > >jan g >> > you have a lot of company in that. >> > best regards >> > ed >> > — >> > ———————————————————————– >> > "The whole business of his life was in the plunder of his gaze…" >> > Daniel Halevy on Degas >> > | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |
– ———————————————————————– "The whole business of his life was in the plunder of his gaze…" Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |
Response:
hi ed, I’m done with the Medrol- have been for about two weeks. but I’m thinking that the steroids have temporarily changed the way that copaxone affects me. like maybe the medrol suppressed my immune system for now and the copaxone reactivates. I’ve thought about shortening the length of time between copaxone shots, and maybe I’ll do that when the MS gets active again. it is funny how different individuals have such varied reactions to meds. steroids have always put me into remission. and I recover recently lost functioning. ( I have a friend who gets much much worse with steroids. but sheryl’s MS has been nasty, anyway. she was one of the first on betaseron and thought that it helped (tho I didn’t see it)- but now she’s on novatrone.) anyway, as I’ve said long ago, betaseron was a dreadful experience for me, and it took me a year to recover from it. still, I’m ready to give whatever new treatment that comes along a try. not always better living through chemistry- but ……. jan g PS told my doc about how copaxone affects me- the improvement post shot. he didn’t think that odd- but said that insurance wouldn’t pay for extra shots. he said that some of his patients with long term MS with chronic disability had shown amazing improvements with the copax. "ed hill" <eh…@world.std.com> wrote in message
news:GIB5LA.DHy@world.std.com… – Hide quoted text — Show quoted text -> hi jan > "jan g" <gillett…@hotmail.com> writes: > >I take copaxone, and have noticed improved functioning about 7 to 12 hours > >or so after the shot. and I know that Copaxone isn’t supposed to work like > >that. > copaxone does the same for me. and it wears down at about 18-20 hours > after the shot. i generally feek great mid cycly and pretty crappy just > before the shot. > but anyway, just finished a brief course of oral steroids with good > >result- but now, the shots seem to make the MS symptoms worse during about > >the same times they used to make me feel better. thinking about quitting > >copaxone for now, or spacing the shots further apart, to see what happens. > your choice but between the two i’d drop the ‘roids. > matter of fact i have dropped the ‘roids. i actually take copaxone every > 12 hours or so when i’m sick or feel an attack coming. > doing this has worked well for me no adverse effects i or my doc can find > and it means not having to trash myself with ‘roids. > look up PTSD and hypercortisalemia on medline. > cortisal is the original GC ‘roid made by your body. the stuff yer taking > is an exact copy but at much higher doses than your body produces. > > get tired of trying to figure out what to do to get my body to function > >better. it’s almost like some stupid hobby that I wish I could quit. or > >some neverending amateur science project. sick of trying to make my body > >"happy". just wish that I could take it for granted, like in the good old > >days. > >jan g > you have a lot of company in that. > best regards > ed > — > ———————————————————————– > "The whole business of his life was in the plunder of his gaze…" > Daniel Halevy on Degas > | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |
Response:
hi jan "jan g" <gillett…@hotmail.com> writes: >I take copaxone, and have noticed improved functioning about 7 to 12 hours >or so after the shot. and I know that Copaxone isn’t supposed to work like >that.
copaxone does the same for me. and it wears down at about 18-20 hours after the shot. i generally feek great mid cycly and pretty crappy just before the shot. but anyway, just finished a brief course of oral steroids with good >result- but now, the shots seem to make the MS symptoms worse during about >the same times they used to make me feel better. thinking about quitting >copaxone for now, or spacing the shots further apart, to see what happens.
your choice but between the two i’d drop the ‘roids. matter of fact i have dropped the ‘roids. i actually take copaxone every 12 hours or so when i’m sick or feel an attack coming. doing this has worked well for me no adverse effects i or my doc can find and it means not having to trash myself with ‘roids. look up PTSD and hypercortisalemia on medline. cortisal is the original GC ‘roid made by your body. the stuff yer taking is an exact copy but at much higher doses than your body produces. > get tired of trying to figure out what to do to get my body to function >better. it’s almost like some stupid hobby that I wish I could quit. or >some neverending amateur science project. sick of trying to make my body >"happy". just wish that I could take it for granted, like in the good old >days. >jan g
you have a lot of company in that. best regards ed — ———————————————————————– "The whole business of his life was in the plunder of his gaze…" Daniel Halevy on Degas | <include>ed’s 3d stuff | http://world.std.com/~ehill | 617-629-4625 |
Response:
I take copaxone, and have noticed improved functioning about 7 to 12 hours or so after the shot. and I know that Copaxone isn’t supposed to work like that. but anyway, just finished a brief course of oral steroids with good result- but now, the shots seem to make the MS symptoms worse during about the same times they used to make me feel better. thinking about quitting copaxone for now, or spacing the shots further apart, to see what happens. get tired of trying to figure out what to do to get my body to function better. it’s almost like some stupid hobby that I wish I could quit. or some neverending amateur science project. sick of trying to make my body "happy". just wish that I could take it for granted, like in the good old days. jan g
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