04-26-2013, 01:44 AM #1Junior Member
- Join Date
- Apr 2013
- United States
Looking for people who have had MS for 30 years
Hi Everyone, I was diagnosed with MS in 1983, back in the days when there was nothing but Prednizone to allieviate the exaccerbations. I have tried Avonex, Copaxone, but am now curious to find out how many long time MS'ers are taking DMDs? I have an upcoming decision to make about getting on R or B, and I am curious to see if any of the dmd's still help those that have had the disease for so long.
Thanks for responding.
04-26-2013, 02:53 AM #2
I was diagnosed in 1989, so that leaves me at 23 yrs. I tried Rebif in 2002 for a couple years and Copoxane for about 18 mon. I had suffered all the awful side effects and I have been off all dmd's since. And now I've slipped into SPMS I'm really ok with not taking dmd's ever again.Karen
04-26-2013, 03:19 AM #3
My official diagnosis was about 28 years ago, but I can remember sx in 1971 of 'numb spots'..Prednisone was the only rx available until Betaseron in '93. My MD was putting me in the lotto to try Betaseron in '94 when it became available for everyone. I started taking it and I've been on it ever since. Pre medicating was not 'discovered' yet and I suffered through years of flu-like sx but I also worked and was a single mother of 3 (with shared custody).
I did have less 'flares' and the side effects became minimal. I am still 'functional' and take care of 2 grandchildren and my home Take CareSusan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart
04-26-2013, 03:06 PM #4
Hi Pepper and Welcome to MSWorld
I've been diagnosed for 28 years, only a couple of years less than you Although I have had symptoms since childhood.
I happen to be one of those who never went on the DMDs, nor do I plan to start.
Best wishes in whatever you decide1985 dx'd RRMS. 5/09/2013:Secondary Progressive without Progression. Never used DMTs. Low EDSS.
04-27-2013, 02:02 AM #5.
- Join Date
- Jan 2013
- United States
Are you asking because of the statistic that says that 90% of people with relapsing-remitting MS will become secondary progressive within 25 years? There's lots of research that shows that DMDs aren't usually effective for progressive forms of MS.
So I guess I have a question for [U]you[/U]. If you want to start a DMD after 25 years why are you thinking only of 2 medcines that have the lowest effectiveness of all of the DMDs? The articles say that if you aren't still having relapses none of the medicines will help and that if you are still having relapses you should probably switch to one of the newer medicines that are more effective.
Is your neurologist thinking that just in case a medicine helps you should be on one with the lowest risk because it might not be helping at all and you should keep the risk down?
04-27-2013, 03:51 PM #6
Not 30, but I was dx'ed in January 1987. We had an MS message board on Prodigy and stayed up with all the trials around the country in the late 80's and early 90's. We even had our own resident neuro with MS.
COPI, COPII, beta 1a, beta 1b, monoclonal antibodies - there were dozens of trials. We followed all the 30% chance of a 30% reduction type results.
I did get into the lottery for beta 1b when it was approved in 1993 but drew such a high number I was told another 15 month wait.
My opinion about the dmd's is clear. I don't take one and don't intend to in the future.
Tom"Doubt is not a pleasant condition, but certainty is an absurd one."