Following recent MRI scan been offered DMD - Avonex or Plegridy or Brabio. Studied the info on all three and the possible side effects include - high blood pressure, additional heart beat, dilation of veins, heart problems. (of course some of theses side effects may be extremely rare.) I have Atrial Fibrillation (irregular heart beat) - so not sure if any of these DMD’s are suitable. If I did take one I would be worried about the possibility of developing the side effects.
Advice/thoughts much appreciated. Thanks
Hello VB/Cracowian
With atrial fibrillation, I wouldn’t have thought any of these would be right. I’ve just had a quick look at the decision aid and Avonex & Plegridy (aka the same type of beta interferon, ie 1a) both have the rare risk of ‘heart problems and high blood pressure’. Brabio (aka Copaxone or glatiramer acetate) has the rare risk of ‘extra heartbeats’. So if you have a sudden spike in heart rate, you could have major problems.
Have you tried other DMDs in the past? Knowing you’re probably in my gang, having been diagnosed ages ago and now more advanced than anything, is there any chance of a different drug? What about Ocrevus? Or is there a reason that’s not on offer?
Sue
1 Like
Thanks Sue
My daughter has m.s. - was on a DMD - got a very rare cancer (salivary gland) - her cancer consultant told her to stop the DMD immediately and not to try another !! - implication being but not actually stated that the dmd had caused the cancer.
As a result I’ve never pushed for a dmd so was very surprised to be offered one. My gut reaction is not to take the ones offered - not sure if others may be offered. Have a telephone consultation in a fortnight - see what happens then.
Daughter had surgery and radiotherapy and is doing o.k. – but isn’t this m.s. a load of c*** !
1 Like
What amazes me more is you were offered these with a history of heart problems. Really this happens so often.
I have high BP and was offered recently a drug that would affect my BP i turned it down. As you have managed so long without why poke the bear? I am sorry to hear about your daughter but sure with treatment she will be fine. x
Yes. A load of cr@p. Definitely. I personally would give all 3 of those drugs the swerve too. Even without AF. If they want to offer you a DMD (finally), why not suggest one that’s more effective and doesn’t have the potential of killing you?
Sue
Thanks CC and Sue - you’ve reinforced what I was thinking - those drugs aint suitable for someone with AF and I wont be taking them.
tbh not sure having read about the side effects if they’re suitable for anyone!
1 Like
Agreed. When there are the plethora of DMDs now available, why would a neurologist suggest an old fashioned interferon? Or indeed Copaxone/Brabio (which is only preferred now because it’s cheaper - out of patent rights). Each of them gives only about 30-35% relapse reduction, paltry compared to most drugs now on the market. And each has potential side effects (I’ve taken both Avonex and Copaxone - had to come off both due to adverse effects).
Why put your trust in a doctor who recommends a drug that is plainly unsuitable for you?
Sue
1 Like
Thanks Sue - my medical history should have been checked before any medication was prescribed. It’s as if those of us who actually have m.s. are sort of peripheral to the m.s. bubble - seems it’s all to do with neuros and drugs.
I think I will follow Churchill’s maxim and just ‘keep buggering on!’
That was Anthony’s favourite too. His emails to me always ended with Keep Buggering On. Or KBO! In the end I just told him to forget the buggering, just Keep On. Still very sad that he couldn’t. Almost a year now.
Sue