DMT help ☺️

I received an appt with the MS nurse and she included a leaflet on DMTs she’s highlighted the ones I can have. Bearing in mind I’ve not seen the Neuro to know exactly what I’ve got I can only assume from the leaflet I have active RRMS. I’ve attached a photo but looking at it in terms of effectiveness and infection risk Vumerity seems the best option. Any thoughts would be gratefully received I’m sure I’ll find out more at my appts but knowledge is power lol


All multiple sclerosis DMTs are much the same muchness tbf, they aim is to stem the progession of the disease, it’s worth trying them out at least.

For me tho, I’ve come to the point where they’re giving me more side effects than good effects, I think it’s now time to go it alone in the fight against further disability imho. :boxing_glove:
Regards,
JP

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My suggestion: ask what is the most effective DMD that you qualify for and go for it. If you qualify for one of the big guns (like Tysabri, which is what I’m on), then chances are that what you need to stay as well as possible for as long as possible.

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Tend to agree with you on Vumerity . A lot depends on how much you react to side effects which vary in strength person to person. If the side effects of Vumerity are too much then you can always change to another one.

I’ve been on Avonex for around 18 years and while I do get a bit fed up with the side effects , my annual MRI scans show no new lesions

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All power to you I say only you know your body and what it can tolerate :smiling_face_with_three_hearts:

Looking at it it’s between ponvory or vumerity in terms of effectiveness I was put off by the infection risk with ponvory. I’m not too fussed about extra tests or even transfusions/self injecting because you find a way to make it work. Kesimpa was the one I was hoping for but even though it’s for active MS I’m not being offered it.

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Thank you for that I guess ultimately I pick one and see how it goes. It’s not like I’m committing to it forever I just want to hit it as hard and fast as I can as I’ve already gone without treatment for 3yrs

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I don’t know whether you have come across these info cards that are being worked on by an associate of Prof Giovannoni from (I think) St Mary’s. They’re still a work in progress, but I think they’re great. By the way, I’ve just looked at the DMD decision-making tool on the (mostly excellent) main part of this MS Society website, and I am sorry to say that it seems shockingly poor and uninformative. These info cards are a million miles better.

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The key factor in DMD choice for me is effectiveness. That’s really the only show in town: the rest (delivery method, side effects, frequency, yada yada) is relatively trivial. For me, that is. But i do recognise that different things matter to different people.

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No I haven’t and I will check them out thank you! I also tried the tool on here and it definately was not helpful :woman_facepalming:t2::joy:

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I believe the reasons for DMDs are sincere but, truth be told, I’ve never been able to shake off the thought of being a human guinea-pig for all of these wonderful medicines. :mouse2:

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All the evidence suggests that the sooner you start treatment, the better the long term outcome. The professor of neurology at Barts agrees with your “early & hard” approach.

Gavinitis or flipping the pyramid - by Gavin Giovannoni

MS Decisions aid | MS Trust

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Hi,
I chose to hit the MS hard with the highest efficacy drug they would give me. In fact I was so keen to do this I argued for a higher efficacy drug than I was offered at first.
In terms of side effects, remember that they are things that might happen - not a list of what will happen. Get a pack of paracetamol and read out the list of side effects there - they are quite scary, but you presumably take paracetamol for headaches?!
You have to balance the side effect risks against what MS might do to you in 15 or 20 years and decide what your priorities are.
People respond differently to drugs and you can always come off a drug if the side effects are intolerable for you. On the other hand, MS disability is sometimes irreversible.
My own experience has been with Kesimpta. 11 months in, no side effects really except right at the beginning. I don’t expect to be on it for ever, but I really did want to hit my MS hard and fast, for the reasons others have given.

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