I’m with you Lion - it’s a very personal decision. I was eligible (just) but declined DMDs - with my neuro’s backing - and have so far had a very good 4.5 year run without them.
I’m not scientifically or philosophically opposed to them, and, like you, don’t judge anybody who does go for them. But also like you, I just didn’t feel they were right for me.
My present neuro has a lower threshold for prescribing than the former one (still technically his boss I think), though the former would unhesitatingly have done so if I’d asked, but supported me fully when I declined. Even the present one is reluctant to prescribe, after 4.5 stable years, as he says he would have to counsel me about risks and side-effects, and that is not really an avenue you want to go down, when the patient’s done OK without for years.
I do realise I took something of a gamble - as I didn’t have a crystal ball - any more than anyone else. I did, however, have a strong belief I’d had MS for years before diagnosis, and therefore that it had already gone untreated for years - this rather undermined any sense of urgency, or the “start early” argument - we were at least ten years too late, and possibly 20, to “start early”.
Of course, if I had decided to take them, there would have been much back slapping about how well they’re working (assuming I hadn’t had some awful side-effect or allergic reaction), and I’d never have been any the wiser that I would have been OK without them too.
That’s the frustrating thing - you cannot know how many relapses you personally avoided - only statistical averages. In my case, I could not have avoided relapses I haven’t had anyway, so I’m of the opinion that thus far (4.5 years), DMDs would have made no difference to me, and indeed may have had some adverse impact on quality of life, with regular injections (only injectables were available at the time), possible side-effects, and so on. I certainly would have felt a lot more “medicalised” than I do.
If you feel you might be tempted to reconsider, now or in the future, do double-check the eligibility criteria, though. As per Geoff’s post, I think you may be wrong in assuming you don’t qualify anyway. The rule used to be two relapses in any two year window (which I only just met by the skin of my teeth - another two weeks and the second relapse would have fallen outside the window anyway).
I believe some neuros are now prescribing on less stringent criteria, although I’m not sure the NICE guidelines have officially changed, so I think if they were a stickler for the letter, they could still insist: “No, two in two years.”
T.
x
