I have been on my MS injection meds for about 20 years. I’m turning 60 and my neurologist is suggesting that I stop the injections because I’ve not had a new lesion in over 15 years. She feels I’m only using the medication as a crutch and since I’m experiencing a lot of skin break down as a result of the injections I should give it a try. But I’m wondering what if this triggers a flare up, but she said it’s very rare for a flare up to occur after the age 60.
If something occurs, it’s going to be from an existing condition.
Any one heard these thoughts before. Trying to decide if I should stop or maybe just switch to an Oral medication
Crumbs, I’m around your age and 20+ years on DMDs and your post makes me very nervous. Is your neurologist saying that you have clearly entered the progressive stage of MS? In my own case, I would want that evidence to be very clear before I would willingly stop the DMDs that have kept me well. But my MS has always been very aggressive and that’s a different picture. I’m me and you’re you and of course you’d neurologist knows you and your MS.
I suspect the consultant may have been implying that the benefits of meds might start to get outweighed by the side-effects? Hitting 60 isn’t like hitting a switch in your metabolism and I’ve not read anything to suggest that lesions stop forming as you age.
If in doubt, ask for a more detailed explanation and if that doesn’t give satisfaction, get a second opinion.
Graeme
I don’t think this is really age related but to do with how long since you were diagnosed. As you are on DMT for a long time I assume you were diagnosed with RRMS and the neurologist will be considering whether you have transitioned to SPMS.
As someone diagnosed with RRMS in my 60s, I find it annoying when age is used without qualification.
Because my ms has been dormant for all those years. I lost 90 vision in my eye about 18 years ago and no new lesions in the last 15 years. She felt I should start to consider stopping the meds. She also said the older you get, the possiblity of any damages from MS is very rare because MS progression slows after the age of 50. But that is probably because I have no other symptons.
I’m in exactly that position @TeddyBear1 . I’m PPMS and NEIDA (no evident inflammatory disease activity), so don’t qualify for ocrelizumab which is the only recognised treatment for PPMS. All I get is a low dose of baclofen for leg stiffness and spasticity. Having been misdiagnosed for years, if it had been picked up sooner, who knows? No point going there. PPMS may be later-onset (I’m 60 now) but can be far more aggressive than RRMS and responds only marginally to DMT’s if at all.
I’ve gone from doing HIIT bootcamps 6 years ago to stick-user when out and part-time electric wheelchair user for longer distances. I haven’t told my MS Consultant about the wheelchair as it would give her an excuse to kick me even further into touch. I’ve asked about getting onto some trials, on the basis that something is better than nothing, but they’ve not put me forward for anything and at current rate of decline, it could soon be too late.