I asked my neuro today if there was a point you could stop your DMD. He said some do, and then relapse, and some stop and don't. I am only 58 and he said he wouldn't suggest trying to go off until 65. I don't really have relapses, but have steadily gotten worse. That could also be the result of having a job where I sat a lot, and just getting older. Just wondering what others have done. I was dx'd in 2006, been on Avonex, Rebif, and Tysabri the first 3 years, developed antibodies or reactions to all of those, so put on Copaxone in 2009 and have done fine with no new lesions or relapses from then until now. I will stay on it because of that. I have allergies to other antibiotics and sulfa, so hesitant to change with something else since it seems to work fine for me and the injections don't bother me.
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Originally posted by 4boysmom View PostI asked my neuro today if there was a point you could stop your DMD. He said some do, and then relapse, and some stop and don't. I am only 58 and he said he wouldn't suggest trying to go off until 65. I don't really have relapses, but have steadily gotten worse. That could also be the result of having a job where I sat a lot, and just getting older. Just wondering what others have done. I was dx'd in 2006, been on Avonex, Rebif, and Tysabri the first 3 years, developed antibodies or reactions to all of those, so put on Copaxone in 2009 and have done fine with no new lesions or relapses from then until now. I will stay on it because of that. I have allergies to other antibiotics and sulfa, so hesitant to change with something else since it seems to work fine for me and the injections don't bother me.
While you're waiting for replies, you might be interested in a recent thread discussion on this topic:
https://www.msworld.org/forum/showth...55-MS-patients
Take CarePPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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I think I was close to 60 when I went off Copaxone completely. I was getting weird side effects from it and the neuro believed I had "burned out". I'll never understand that since I have daily symptoms and some are worse than they were before.Marti
The only cure for insomnia is to get more sleep.
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I also was close to sixty when I had transitioned to SPMS. No new activity on MRI, no relapses for years. Had a talk with my neuro and she gave me the green light to go off Copaxone.
It's a personal choice and if you are comfortable with your treatment plan to stay on it, then do so.1st sx '89 Dx '99 w/RRMS - SP since 2010
Administrator Message Boards/Moderator
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I responded to the recent thread referenced by Koko. Still on Copaxone at 57. Will consider going off when my MS Specialist recommends it.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Originally posted by Seasha View PostI also was close to sixty when I had transitioned to SPMS. No new activity on MRI, no relapses for years. Had a talk with my neuro and she gave me the green light to go off Copaxone.
It's a personal choice and if you are comfortable with your treatment plan to stay on it, then do so.
At one time my neuro told me she believed I had reached SPMS. But she never truly documented it. Then my next neuro just thought my MS had burned itself out. I have always believed that I am in the Secondary phase. But, I am doing okay without the Copaxone.Marti
The only cure for insomnia is to get more sleep.
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Thanks everyone. I have never really had relapses, just a steady worsening that could be attributed to aging. I guess if it gets to the point where the medicine costs too much, that will be a good time to quit. I'll read the thread!Brenda
Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.
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My MS specialist has mentioned it for the future regardless of if I meet criteria for SPMS. I will consider when I retire or maybe if I'm forced to retire early. While I'm a big fan of medication prescribed judiciously if I don't see a benefit the risks won't be worth it for me.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
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One MS-specialist neurologist/doctor's view on this idea, FWIW. A 5 1/2 minute video.59M / RRMS / Dx1987 / Ocrevus
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I stopped Copaxone @ 62, after 6+ years of no relapses, no worsening.
I saw my neuro last week and he was happy that quitting has apparently had no effect after 14 months. He said that if nothing new shows up in the next year we can stop seeing each other so often...
...and yeah, aging is a thing!
I was tired of the injections, but would have kept going if my neuro advised it.1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
NOT ALL SX ARE MS!
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Well, after reading up on the whole option of stopping around age 65 and talking it over with my neuro, I've decided to give it a shot. I also agreed to have a current MRI done, to document what is going on inside my brain in the event that I have a flare and if I should have a flare, then it's back on the DMDs. Keeping my fingers crossed.Wendy
"There are signs everywhere...."
"Life is wasted if it's not lived as an adventure."
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Originally posted by TheBeans View PostWell, after reading up on the whole option of stopping around age 65 and talking it over with my neuro, I've decided to give it a shot. I also agreed to have a current MRI done, to document what is going on inside my brain in the event that I have a flare and if I should have a flare, then it's back on the DMDs. Keeping my fingers crossed.Kathy
DX 01/06, currently on Tysabri
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Update: Had the MRI, with and w/o contrast and it looks the same as the last one did, done all those years ago! Which is a good thing! I think I'm having a new experience though: spasticity. Not sure if that is what is happening so I'm making note of all the things that occur and if it continues then I will be talking it over with my neuro to see what happens next.Wendy
"There are signs everywhere...."
"Life is wasted if it's not lived as an adventure."
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