I have appointment at Kings London this Wednesday and
Just wondered what people are being offered theses days for DMD’s. Ive recently had triple MRI and results for brain a concern, my local consultant has left to join another hospital, so my nurse has made appointment in london. She thinks may change my DMD?..
Many years ago i was started on Copaxone, for only 12 months, the there was Betaferon, and finally Tecfidera, some 7 years ago. Just wondering what drug could be next?..
Have a look at MS Decisions aid | MS Trust The category 2 drugs would probably be what you could be looking at next.
Tysabri maybe? Lemtrada?
Best of luck
Consultant was very good at kings, and filed me full of confidence, and yes very quickly said i needed Stronger drugs sometime soon. He having meeting this tuesday with other Neurologist to see what they all agree will be best. i think Lemtrada was metioned, but he dint think as strong as needed for me?, i cannot recall names of drugs needed but one option was a monthly injection that stops 70% of hits, and other option was a 6 monthly infusion that stops 80% of hits. Nows just a waiting game.
i was concerned my consultant in MEDWAY has moved onto to a new hospital, and what was i to do?.. he said your now my patient!!, so a win win!!
It certainly sounds like you’ve landed on the list of a good consultant. Kings Hospital have always had a great MS clinic and specialists.
Was it Tysabri? I’ve been on Tysabri for 10 years and it’s been a wonder drug for me. I had been on Avonex for 10 years but my MS overpowered it after about 7 years. If I had upgraded sooner, I might have dodged some very nasty relapses in my later Avonex years that left permanent damage. The sooner you can get on a drug that keeps your MS in proper check, the better.
I think he wants me on drip drug twice yearly?, Tysabri is a monthly drip isn’t it?.. As it stands nothing confirmed until specialist meeting next week. How are side effects for you?..
No side effects to speak of of. Good luck with whatever high-efficacy drug you go for.
Thanks, I will let you all know when i do what drug has been decided for me…
Ok so Neuro team have sanctioned 6 drugs options for me, my consultant has told me of 3. His options are Ofatumumab, Ocrelizumab and Cladribine. Meeting at local hospital to discuss these options tomorrow…
I’ve only recently become aware of Ofatumumab (aka Kesimpta). To me it looks like a great drug. One that you self inject monthly but with great relapse reduction potential seems like the best of all worlds. (My amateur opinion only!)
But all your options look good. You could compare the three drugs on the MS Trust Decisions Aid (website link I gave you previously).
Remember to consider a few things. One is what drug fits in best with your lifestyle (in terms of transmission of the drug). Another is weighing up relapse reduction rate against potential side effects.
The last thing to think about is that ultimately it’s your decision. Your doctor, nurses, etc will have their own opinions. But it’s you that has to take the drug.
Best of luck with the meeting.
I have to say Sue, I’m thinking the same thing?, Kesimpta just as effective as Ocrevus, and 20% better than Mavenclad, and link to different drugs very useful to, much appreciated Lee…
Don’t forget Lee, if the first drug you try doesn’t suit you, changing it is usually possible.
Best of luck.
Finally got to see my nurse last Wednesday afternoon, and it seems i read my letter slightly wrong. they have in fact offered me 6 different drugs, not just the 3 i quoted, other 3 Fingolimod, Natalizumab & Alemtuzumab.
Other issues i have, are my local hospital doesn’t have an MS consultant and therefore cannot administer any drugs in house. so would be London for me, but have been told also they have taken quota for Ocrelizumab?, other option for Ofatumumab means i would have to go up town to half half syringe on day 1, and 2nd half day after!, and not to sure how it will be after that?..I’m actually now considering Cladribine, as just 14 tablets for whole year, followed by another 14 in year 2!, and currently no more after that?..but need to look into others as well, sadly nurse just said she couldn’t advise me on drugs, but did say 1 could be just what i need??, so hoping i pick correctly?..