I’m thinking your reply was intended for @muchthesamemuchness ?
You’re absolutely right! Sorry about that. I hope your weekends going well.
Have you been in dmds for a while? I’m taking Siponimod for spms, been on it for 3 months. I’m sure my neurologist gets a good cut from it.
This guy sound’s interesting:
I reckon that might be 5 years away.
He seems to confirm that long term dmds have little effect on disability levels over time. It does seem weird to knock the immune system out.
It probably fair to say that pharma-funded conferences to which neurologists are invited are more likely to be in Bali than in Bootle (with apologies to friends from Bootle) but I don’t believe that doctors over here paid to prescribe this over that by the drug manufacturers. Happy to have my illusions shattered if anyone knows better.
I’m pretty sure you are right and that any Dr prescribing one drug of any sort for any disease because he had received payment from the manufacturer would face being struck off.
Just jumping in on the chat. I’ve been on Avonex for about 18 years. Not had any problems with it - except for feeling rubbish for 1-2 days after injecting.
I’ve not had any new lesions in my brain and no new symptoms. Bit by bit however, old symptoms are getting worse. Coincidentally I was talking with my MS Nurse about all this a few weeks back and in particular about lesions and worsening symptoms. Interestingly, although the term ‘secondary progressive’ wasn’t used she did say that my symptoms- disability will slowly get worse. She also made a point about continuing with the Avonex because even though I haven’t had any new lesions, they can develop at any time for years and years after diagnosis ( Like all DMTs, Avonex reduces the number of new lesions-relapses and I most definitely don’t want any new lesions- symptoms so I’m most definitely going to continue with Avonex or maybe a more effective one).
I will also be hoping and praying to the Universe that someone finds a way of putting out the smouldering around existing old lesions. Plus of course , that sometime not far away, we get remyelination treatments
I’m a little puzzled by your comment about DMTs not making any difference to progression of disability? My perhaps optimistic view and understanding is that relapses and associated new lesions are potentially going to affect I.e begin to destroy new parts of my brain which of course means that what ever functions that part controls are going to be ‘disabled’.
In my case it’s my right leg and to a lesser extent right arm that are affected. Damage to the parts of my brain or spinal chord that control my left side would be a total nightmare ![]()
That makes sense if you’ve been on dmds for so long. They probably did their job in the early days but it sounds like the time to stop. And you’ve probably got to know yourself and this ridiculous disease pretty well?!
I don’t know how long I’ll continue with mine, but it won’t take much to make me stop.
It’s a freakin’ boring subject to have to talk about, but it’s kinda good as well to talk to someone who gets it. This rain doesn’t help, we’ve had it for weeks in stroud. I miss Spain!
DMDs have kept me on my feet for the past 25 years. I do not think that I would be on my feet without them: my MS was aggressive from the start and things were going downhill fast. My personal experience is that they can make a life-changing difference. I cannot speak to the technical literature.
Even stroud has sun today!
The dmds seem to be working for me at the moment, no flare ups.
But I don’t know how I feel about knocking out the immune system long term. But I’m off for a blood test to see how they’re affecting me.
Which one are you on, Tom?
I have my jabs tomorrow! Hope you’re feeling ok after them, I don’t seem to really notice them.
I’m interested to try Bowen technique. I’ve tried all sorts, did they help? Would I now be worse? Who knows.
I think death will mean the end of suffering. Is that morbid? I don’t know any more!
How amazing to have some sun back
and I don’t think it’s going to rain until Sunday! Woohoo.
Have a good weekend.
Siponimod, as I have spms
What about you?
Avonex first for 10 years, and I must have been on Tysabri for 14 years or so now.