I wander if anyone could offer some guidance on where to find some good advice as to which DMT to take.
I was diagnosed with MS 5 years ago and at present average a relapse every 8-12 months so my MS nurse has said its time to think about starting DMT. I’m waiting to see my neurologist to discuss things with him but would like to know everything I can so I am fully prepared to understand what he is saying - the MS nurse just gave me a book listing all the different DMT’s which completly blew my mind.
I’m guessing I will be started on one of the inferons but do I get a choice or is it purely down to the neuro and will only be changed if it doesnt work or I cant handle the side effects?
Hi Andy. I am surprised you aren’t on DMT already. I got the MS diagnosis nearly 10 years ago and started DMT almost straight away. I chose which to try. After that became unusable for me, I was advised which other to try. I am still on that one. I read the booklet I was given and read on this forum about people’s experiences. It was easier then because there were only 4 options. Firstly, check your booklet is up to date. New drugs became available as recently as April this year. Work out, if you can, which ones you won’t get because they’re for a type of MS you don’t have. That will narrow the field. Then look at prognosis, side-effects, and how the drugs are taken and decide, for example if you are physically and emotionally able to handle injections. Now you should get a picture of which drug is for you.
I went straight in on Tysabri because my current neuro is a member of the “hit it early, hit it hard” brigade. She was very concerned because of the number and nature of my relapses - I wasn’t having tons of relapses but I wasn’t really recovering significantly from them. In particular she wanted to go with Tysabri because of the effect on my mobility.
She was very good about making it my choice and certainly didn’t pressure me but it was the treatment that I was hoping for so I was very glad that it was what she was recommending.
My initial neuro was a bit more more cautious and delayed stasrting DMDs for a long time. (But I still am not 100% sure whether this was because I let it slip to him that I was probably moving to Wales so he saw a golden opportunity of getting me off his list and off NHS England’s accounts )
For me Tysabri has been good - not a cure by any stretch of the imagination but it does seem to have put the brakes on a bit. Long may it continue.
My MS nurse said BG12 Tecridera is very close now and they are just waiting for the green light so its available. So am going to wait for that as it seems close now. If that doesn’t work out for me I am going to request Lemtrada.
Many thanks for the advice, I will certainly take that all on board.
The reason for only just going onto DMT is similar to Boblatina’s in that I moved to another part of the country 2 years ago and basically had to start from the beginning with a new new Nurse and Neuro.
My MS Nurse was pointing me towards Betaferon as the side effects shouldn’t worsen my usual symptoms in particular that i have been rather unfortunate that the majority of my replases have been optic neuritis. I also dont have any issues with self injecting which is a plus.
Being a typical stubborn bloke I wasn’t keen on starting DMT but the time is now right. anything that could potentially protect my sight has to be a bonus.