Just a small but important correction (and I have no axe to grind, as I’m not on them), but the “traditional” DMDs (that is, the injectables), don’t have only a 35% chance of success.
On average, they reduce relapses by 35%, which might sound, superficially, as if it means the same, but it doesn’t. “35% chance of success” would mean each patient had only about a 1 in 3 chance of any effect at all. But 35% fewer relapses means, on average, each patient gets one third fewer relapses. Obviously, within that, there will be some who do a lot better, and some who get no benefit at all - it’s only an average. But it doesn’t mean two-thirds of patients get no benefit.
I realise this has no bearing on your own situation, if it’s clear for other reasons you are done with them!
However, for the benefit of anyone reading who is considering DMDs for the first time, I just thought it important to explain that although effectiveness varies, you don’t have just a 35% of them doing anything at all.
As for being misled about trial eligibility, sorry to say, this is not unique - or even unique to MS.
When my dad was terminally ill with a very rare type of lung cancer, caused by asbestos, he was told he was eligible for a trial that had a chance of prolonging life - but the side-effects were very serious.
We were just about to go away on holiday - one of the two last holidays we would have with him, as we knew he was dying.
He was told to use the time to to think carefully about it, and let them know his decision when he got back.
So I know it preyed on his mind, and to some extent, spoilt the holiday.
He was very undecided whether to choose quality over quantity, so I don’t know what he would have opted for. But when we got back, it was all irrelevant anyway, as it turned out he’d been misinformed about his eligibility. He wasn’t eligible, and never had been. The trial was only open to patients with “ordinary” lung cancer (the kind often caused by smoking), and not his “rare” kind, that’s only caused by asbestos.
So in some ways it was easier that he didn’t have to make an almost impossible decision. Yet there was also the disappointment of not having an option he’d been led to believe he had, and that he’d had a spoilt holiday worrying about it, when there was no decision to make. I was so angry, as we can never get that holiday back. We only had it because he knew he was dying. He didn’t need the extra worry of being told to use the time to think carefully about a treatment that was never open to him. That was the Macmillan nurse! How can they get as far as telling the patient to go away and think carefully about a treatment they were never even eligible for?
I know this doesn’t make your disappointment any easier to bear, but unfortunately, mistakes do happen. You would think, even more than with MS, they would make sure a terminally ill patient wasn’t misled about his options, but my dad was.
Tina
and maybe you can now demand that, or at least Tysabri. Many people have been on Tysabri and have stopped relapsing and even had some disability improvements.