Secondary Progressive taking Copaxone

[LindaHen]

Has anyone moved from RR into Secondary Progressive and continued taking Copaxone? I have been for years. Neuro told me to go ahead & stop as that is the current opinion once you hit my age (62) & had to major exacerbation in over 10 years. I'm just nervous thinking what if being on Copaxone is what has kept me from a major exacerbation. Ideas or opinions?

[Kenu]

My neurologist says there is no proof that DMTS do not help slow progression and keep lesions stable🙏. He advised to stay on DMT’s and I am 64. My best friend is 73 and still on Copaxone and has been for twenty years and stable 👍🙏😉😊. That’s my opinion is stay on it. Ken 🐾🐾

[LindaHen in reply to Kenu]

Thank you Kenu

[Bodega1939 in reply to Kenu]

How wonderful to have people on line with real-time experiences! I will keep all this information in mind as I, once again, discuss disease modifying therapies with my MD neurologist.

[greaterexp]

I would tend to agree with Kenu, generally speaking. This is a question many of must face, but I just don’t know that there has been lot of research on it. I sometimes wonder if the suggestions are based more on insurance companies deciding that past a certain age, we aren’t worth the investment, so to speak.

I wish we had a perfect answer for you, but we support your decision, whatever it is.

[LindaHen in reply to greaterexp]

Thank you greaterexp

[GildaS]

I am struggling with this issue myself, although not because a doctor has told me I could stop. I don’t think there is any hard evidence to support the theory that DMT is unnecessary after you reach a certain age. Everything I’ve seen is anecdotal. I have been on Copaxone since 2002. No major exacerbations, ever. I would dearly love to (1) stop injecting and (2) forking out a small fortune every year for Copaxone, but I don’t want to take the risk. Good luck in whatever you choose. Hopefully, as more of us age with MS, someone will study this issue, although drug manufacturers certainly have no incentive to do so.

[LindaHen in reply to GildaS]

Thanx for your feedback GildaS.

I would think there is a huge incentive for the drug companies. As more of us "Baby Boomers" ( & there's a lot of us) are aging, it seems the drug companies would like to keep us on the drug as long as possible & would justify a study. That is unless they already know the answer & just aren't sharing if they have discovered the conclusion not in their favor. Oh well. I guess there's not enough time lapsed to know of anyone who has stopped Copaxone for any amount of time & their conclusion. I'm really scared of stopping it & regretting it for the rest of my life.

[Doubled51]

I was 65 when diagnosed and my neurologist started me on a dmt. My first mri after dx I had 6 new lesions but after starting my Plegridy my MRIs have been clear except for 1 small non active one on my spine. So I’m a believer in dots regardless of age. But that’s just my opinion.

Donnie

[LindaHen in reply to Doubled51]

Thank you Doubled51. I tend to agree with your opinion & doubt my Neuro's opinion

[Rascil62]

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[agate]

LindaHen , I started taking Copaxone even though I'd been in the SPMS category for over 20 years. I stayed with it for 3 years but stopped because I was keeping an eye on the studies and noticing that none of the DMTs at the time were really approved for SPMS--though that was mainly because they hadn't been tested in SPMS. At first the idea was to prescribe the drug for SPMS anyway on the off-chance that it would help, but people who have had SPMS for a long time may not be having relapses, and it looks as if having relapses is the key to whether the MS drugs will be effective.

Two new drugs that were just FDA-approved--Mayzent and Mavenclad--were supposed to be for SPMS (the first ever to be approved for it) but as it turns out, they're for people with SPMS who are still having relapses. They're calling that "active SPMS."

But many people stay with the DMTs they have chosen because they feel that they are being helped by them. I opted not to go that route after 3 years because I didn't want to have the "immediate post-injection reaction" that I've heard about. I live alone and didn't want to pass out with no way to get help. If I'd felt there was enough evidence that Copaxone was helping me, I'd have taken that chance, but there just wasn't.

[LindaHen]

Thank you agate. I'm feeling the same way

[TonyiaR7]

Copaxone or it’s generic equivalent has been my safest bet . My neurologist thought the other meds would make me more ill; I am suffer from different types of infection and have a low white blood count. It must be doing some good since I have been on it since the 90s and I am still on it. I had problems with Gilenya but my BP kept plummeting dangerously low. I was considering Ocrevus but they don’t test past 55 years of age. And I am 63. I wouldn’t stop a DMT while waiting for the next new one