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Big decision - DMT

Haven’t been on here in a while.
Officially diagnosed in Feb 2021 just before my 35th birthday. MRI showed 3 new lesions - ugh!

Have been offered 3 treatments - Copaxone, Tecfidera or Ocrevus.

Feels like a massive decision. And loads to consider. Leaning towards Ocrevus. Feels like the bi-annual infusions would work better with my lifestyle. And I’m inclined to go with the big guns and hope I can get ahead of any future progression…

It’s just information overload though with effectiveness and side effects etc. How do you make this kind of decision?!

Hello

I don’t know whether to say commiserations, congratulations (getting out of limboland), welcome (officially) to the ‘family’ or just awwww!

I honestly can’t really offer any experience. When I was diagnosed there just weren’t the vast array of choices you have today.

I like to think had I been offered the 3 you’ve been given the choice of, I’d have taken the ‘risky’, scary option of Ocrevus. I know when I first heard of Lemtrada (or Campath as it was called then) in about 2002/3 ish, I’d have given anything to try that. Not that it was anywhere near licensed.

I would personally rule out Copaxone as there can still be side effects and the benefits are only a relapse reduction rate of about 30%. But that’s just my view.

Honestly though, all I can say is to talk about it with your family and friends. Try to get them interested in the risks (side effects) as well as the benefits (relapse reduction rate). Get them to have a look at MS Decisions aid | MS Trust (I assume you’ve seen the decision aid?)

Talking through the options may just help you to make your own mind up. Like if your best friend says ‘take the big guns’ and your parents think that’s too risky ‘take Copaxone’ (or vice versa). You may make the decision to go for Tecfidera!!

Other people will probably comment on their own decisions, having had the same kind of choice you’ve got to make.

Sue

Thanks Sue - have always massively valued your opinion on this forum over the years.

Am inclined to agree re: Copaxone. The side effects seem unfavourable for little reward.

I think for me Tecfidera would not suit my lifestyle. Ocrevus seems the obvious choice but still a scary one and not without possible side effects.

I think considering treatment has made the recent diagnosis feel even more real and scary. Thinking ‘if I don’t have treatment, what might happen’…MS sucks!!!

I was thinking, you could have a look on All the latest on Shift.ms for personal experiences of Ocrevus. There are a lot of users on that forum who’ve been prescribed the newer ‘big scary’ DMDs! Maybe more than on here. Use the search :mag_right: term ‘Ocrevus’. To start with there are lots of posts by people either about to start the drug, or having their treatment delayed (dam Covid), but just delve a bit further and you’ll find useful info.

The other problem just now with getting personal views on drug therapies here is the new format of this forum. It’s put quite a few people off, and getting to grips with it isn’t easy for many of us.

Oh, and you’re so right, MS does indeed suck. It’s a ¥#§<^ of a disease.

Sue

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Really helpful link, thanks! Been having a good nose and read through peoples experiences. It’s definitely helpful. People seem pretty positive about Ocrevus and I think that’s the way I’m leaning…

And you’re right, the new format of this forum is a bit confusing. Took me a while to figure out how to post / reply but I’m glad I’ve come here as I’m already feeling a bit more at ease about things :slightly_smiling_face:

I watched a doctor on youtube explain DMT and he recommended the new ones. thats all i know. he runs his own MS clinic in the states i often listen to his blogs, he really is great.

I know a few people on ocrevus atm, and they seem very happy with it.

Wow thanks guys. I have been on tecfidera for ages thinking it was the best one for me - was at the time. BUT just been on the MS decisions link and now thinking perhaps Ocrevus might be better. Especially as currently having problems with my damn right leg - just feels enormous when walking and I could swear that I am limping now. Anyhow I have an appointment with a neurologist this week so will speak to him about it.
THANKS
Hugs
Min xx
Yes still not getting on with this new site. I didn’t think the old one was broken so why fix it - badly!!! I also want to give my badge back!!!

I dont or didnt have an option as i was diagnosed with PPMS in 2016. My neurologist then did say about ocrevus, but felt as i had MS for so long it would more then likely be too late, and i would have to get a ton of test before i even started, and well the gains of it probably were minor.

so decision was made for me.

I just eat well, rest well and try to have a decent life. You have an option and i think its good you are taking time with it to make the right decision for yourself.xx

:hatching_chick::hatched_chick: :baby_chick: :chicken: