Hello everyone.
I have just had my diagnosis confirmed by my neurologist. I was originally led to believe I had a stroke 4 years ago and was treated for this until new symptoms reared up.
My post is really about what DMT to go on.
I have been told to choose from mavenclad, Kesimpta and Ocrevus.
I don’t really show many symptoms atm but Dr wants me to start on a treatment before my next mri scan.
I wonder what anyones experience is of any and any help would be great.
Thanks
Hi there,
It’s shocking the Neuro has told YOU to make the choice.
That’s irresponsible and neglectful.
You’ve already had incorrect info re Stroke. This latest is taking the mick.
My advice is to ask the Neuro what they’d recommend. It most certainly should not be your own decision unless you’re a Neurologist.
Good luck I hope you’re not passed from one dept. To another.
Stay strong
Chrissie
It should be standard practice for the neurologist to offer you a choice of appropriate DMTs., perhaps with a recommendation of what they believe is the most appropriate. Your choice will be influenced by the method of administration for example. I would expect your MS nurse to help you make your choice. Look the options up on the MS Society and MS Trust websites which have tools to help with the process.
Taking some control of the decision process will help with your commitment and resolve.
https://www.mssociety.org.uk/living-with-ms/treatments-and-therapies/disease-modifying-therapies
These sources are much more thorough and reliable than any reply you can expect here.
It’s standard practice in the UK to be given a choice!
I was given those 3 plus another to chose from with switching from tysabri.
I did my research on the MS trust website using their decision tool and read academic papers on them.
I then made an informed choice along with my MS nurse.
My advice would be to do some research on them and work out what works for you. Everyone is different and depending on your lifestyle one might suit better than the others.
I really like these info cards because when you’ve decided what is most important to you (efficacy, side effects, compatibility with starting a family or whatever) they allow you to compare your options in a consistent way. In my view they are miles better of the other aids to choice that I have seen, including the one on the main part of this MS Society site.
Hi,
I was given the choice of Ocrevus, Kesimpta, or Ponvory. (It does seem to be standard practice to be offered a choice of two or three?)
I did loads of research, a lot of it on YouTube looking at neurologists’ channels (eg Aaron Boster, not sure if I can provide a link here) and there’s also a lot of MS patients on there who upload videos about their experiences with various MS drugs. I found this helpful in making my choice, but try not to get too mired in it, as there’s so much stuff on there!
The MS Trust also do a brilliant publication detailing all the available DMTs, listing their benefits and side-effects.
In the end I went for Kesimpta, - one jab a month.
Good luck with whichever you choose 