I live in West Wales, i have had an MS diagnosis recently, i have been asked to take part in a study, the aim of which is to work out if aggressive treatments are best to go straight in with or escalating treatments as and if required.
There is a choice to have the computer randomly choose your treatment to start with, or you can choose yourself.
I had my neuro appointment over the phone where this was explained, my concern is, which course is the most detrimental to the immune system? IV, self Injection or Tablets?
As it is now, i am ok loosely termed, i get fatigued, i have a burning tongue which isnt nice, and i suffer with balance when i am tired, but i am as we all are worried about covid so i am not sure which treatment to choose that will leave me best equipped to fight covid should i get it (again)
Thank you in advance for any advice given and best wishes to all
For what it’s worth, I wouldn’t want to be assigned by chance if I had the chance to choose. I would welcome the chance to choose and my choice would be to hit MS as hard as possible as early as possible. That would certainly have been the right course for me in my circumstances, but your circumstances and your decision are your own. And I have the 20:20 vision of hindsight, having had my version of MS for 20+ years! For all I know, your MS might be much more benign and those stronger drugs would have been overkill and needlessly risky for you.
It would be a fair question to ask your neurologist what of the options available to you would he/she choose in your shoes. You might get a cautious answer and you might get a straight answer and those two may or may not be the same, but it’s worth asking.
I agree wholeheartedly with Alison. Given the choice, hit MS hard and early. I couldn’t and am very disabled after 25 years.
The only thing I’d add is in the current Covid world, try to avoid any immune suppressant drug. You could do with a strong immune system in case of catching Covid a second time!
Have a look at MS Decisions aid | MS Trust If you’ve been given a list of available drugs, you could compare them. Have a look at potential relapse reduction rate, means of administration and possible side effects to help you weigh up your preferences.
I have a booklet offering me loads of differnt choices, i have spent a lot of time reading up since posting this and am erring towards Tysabri, as i dont feel that the trade off (side affects) with the others on the list compares well enough to the statistics of preventing relapses
I have a list that has Beta Interferon and Glatiramer Acetate for self injection, which apparently is 30% effective, then i have 4 options for tablets which also i dont feel the potential trade off with side affects vs 50% effective is good enough, then 3 options for IV, i was scared of Lemtrada to be honest when i read more on that one but have also read people with good experience relapse wise with Tysabri, though the PML scrares me witless as well!
I wont complain, but its hard to accept this is my reality now, and i know that sounds selfish but it will be a while until i can accept whats happened to me
My best wishes to Sue and Alison, appreciate your advice
The thing about disease modifying drugs that they politely offer themselves with a list of risks and benefits and you can decide whether to take them or leave them alone. MS isn’t like that: it barges into your life without the option and its effects are permanent, frightening and not optional. The patient information sheet for Multiple Sclerosis would not be a pretty read. Please do keep that in your mind when choosing the best drug for you. MS is your enemy and those drugs are your friend.
For what it’s worth, I was on Avonex for 10 years and have been on Tysabri for ten+ years and counting. If I had been on Tysabri from the start - not an option back then - I would be a lot less disabled than I am now. Tysabri has been a wonder drug for me and it has stopped my highly active MS in its tracks. The big hitter drugs really can do that. I’m not saying go for Tysabri: I’m me and you’re you with your own life to live and decisions to make. But honesty compels me to say that I wish I had had your choice to make.