DECISIONS 🤷🏼‍♂️: Well my neurologist and... - My MSAA Community

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DECISIONS 🤷🏼‍♂️

Kenu profile image
Kenu
16 Replies

Well my neurologist and I talked about this same subject six months ago at last appointment. I have had MS for almost 26 years now and I am over 65 and have been stable for quite a few years with mri’s stable and no new lesions. Haven’t really had a major flareups in long time just the slow progression. Think that it’s up to me but doesn’t think medication is doing anything? Have been on Aubiago for over two years now and doing well. Was really nice and explained everything again and what’s up with new meds and it’s totally up to me if I want to go off ? I have about month and half of meds so I have time to think about it. Would like everybody’s feedback. Thanks in advance 🙏😉😊🐾🐾Ken

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Kenu profile image
Kenu
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16 Replies
greaterexp profile image
greaterexp

So much to consider. I guess if it were me, I’d be tempted to at least try to go off of it for a while and see how it goes, but it may be that it’s the reason you haven’t had relapses. If you aren’t having problems on the medicine, dies he feel pretty sure that you won’t have relapses once you go off if it? Can you restart it if you were to have a relapse?

Kenu profile image
Kenu in reply to greaterexp

Yes he feels good about me going off and can restart ASAP if needed

carolek572 profile image
carolek572CommunityAmbassador

I have heard of some go off of their DMT after being on for so long without any signs of progression but I agree with greaterexp , and go off of DMT but only if you can go back on if you have progression. Make sure your neurologist keeps a watchful eye on you, my friend. And Keep Smiling, Kenu :-D

Kenu profile image
Kenu in reply to carolek572

States first year or so mri’s every six months

RoyceNewton profile image
RoyceNewton

I have heard from medical soursources that your case may not be unique. The gist I got was that the disease slowly runs it scourse in our later years. I think with everything ms, later years are individual. I feel in my non prtofessional OPINION that stopping or slowing DMT sounds like it may be an option for you.

In my case I would YES stp if that is what my Neujro suggested.

Kenu profile image
Kenu in reply to RoyceNewton

Thanks 🙏

Timeflies5 profile image
Timeflies5

Maybe do a trial stop? I mean after all, we do a washout period before switching DMTs, right? Is your neuro going to increase office visits to keep an eye on you? I think I would welcome coming off DMTs for a little while to see how it goes, especially if my neuro suggested. Take a little time to think it over for sure...blessings!

Kenu profile image
Kenu in reply to Timeflies5

Yes he agrees to keep close eye on me. Thanks 😊

anaishunter profile image
anaishunter

Maybe give it a try if you know you have the option to get back on it.

I think the general idea is that autoimmune diseases slow down when we age as our immune system gets less active.

My mom at RA and she was told about expected reduction of joint pain and disease activity but her RA was flaring up regularly until she died at 82.

Give it a try but stay vigilent.

Kenu profile image
Kenu in reply to anaishunter

Thanks 😊

jimeka profile image
jimeka

I too have read that ms tapers off as you get older. May be as others have suggested, give it a go and come off it, Blessings Jimeka 🤗

Kenu profile image
Kenu in reply to jimeka

Thanks 🙏

jackiesj profile image
jackiesj

WOW is what I say, grt news.If you chose to slowly cut down monitor it...id worry about relapse but we all do.Seeing in the future with things changing..much to pray on.best wishes of course.

Kenu profile image
Kenu in reply to jackiesj

Thanks 🙏

mrsmike9 profile image
mrsmike9

I, personally, would be afraid to go off. But that's just me. I'm nearly the same age as you but have not been diagnosed as long. My MRI's are stable as well and I want to keep them that way!

Kenu profile image
Kenu in reply to mrsmike9

Thanks 😊

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