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Level - 2 DMT?

Hi everyone,

I’m being moved a Level-2 DMT

I’ve had a few relapses recently, 1 on the right hand which has gone that’s all better. But I had 2 more both on the eyes again; it’s always my eyes that get hit.

So that makes it left eye hit 4 times, right hit eye twice. My eyes have improved over the last 2 months or so but my Neurologist actually phoned me, I don’t know about you but trying to talk to a Neurologist without paying him privately can be very difficult which I cant afford. So this was a very strange act from him.

Anyway I’m being moved to a Level-2 medication, one of the below, I’ve not been in yet to talk about with my MS nurse I just got the news yesterday. MS has become even more real right now for me, maybe it’s just the shock. The DMT that I will be moving to is one of the following: -

Gilenya

Lemtrada (licensed as first line)

Mavenclad

If anyone is on any of these I would be grateful for your experience with them, side effects, how it’s affected your daily life etc…?

Thanks and take care everyone

David

hi david

i moved from copaxone to tecfidera.

however in your position i would go for lemtrada.

only hear good about it.

carole x

1 Like

Hi David

Actually the only level 2 drug in your list is Lemtrada. The others are 1.2. (See https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid to compare the three drugs)

Lemtrada also has a better relapse reduction rate (70% on average).

I too would go for Lemtrada. But then I’ve been envious of people with the option to take Alemtuzumab (the drug name as opposed to the brand name) ever since I first heard about it in 2002.

Look out for people’s personal experiences of the drugs. There won’t be so many for Mavenclad (Cladribine) as it’s not be available for so long. But do look for Katy79s posts about Lemtrada. She’s written quite a few and is very positive about the drug.

You could also have a look on https://shift.ms/ as there are likely to be lots of personal experiences with the various drugs on that site.

Good luck with your choice. You’ve been very unlucky to have your eyes hit so frequently.

Sue

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I’m with Carole and Sue.

There are no risk-free options, but the only sensible way to hit aggressive RRMs is hard and fast, and for me that means (from the options you have been given) either Lemtrada or Mavenclad - both highly effective treatments.

When I was in your shoes, 20 years ago, the drugs were less effective, but still better than nothing. (It went for my eyes and hands early too, by the way).

I hope that your DMD can stop your RRMS in its tracks before it does too much permanent damage. That’s the name of the game here.

Good luck.

Alison

Hi Sue,

That was very nice of you and informative, thanks very much

Deeply appreciated thanks again and take very good care

David

Thanks Carole

Tecfidera is what 'm on just now. I’ve had Copaxone & Avonex with both I had a real bad experience but Tecfidera was working fine for me I was happy/tolerate the side effects no problem did even notice to honest.

Just need to wait until I see my MS Nurse or Neurologist for a chat which should be soon/

You gave me a kiss are you single? LOL

Thanks again for getting back to me and take care

David

Hi Alison,

Sorry to hear it was your eyes and hands that got hit too.

I was diagnosed 11 years ago now and had a 9 year grace period with no relapses that I noticed, but its well and truly back now. I knew it would happen at some point, it is what it is.

Yeah I know what you mean, you don’t get DMTs for free there is always a cost to pay with side effects, Copaxone and Avonex were both a painful nightmare for me, Tecfidera was great but I’m moving on up now.

Thanks for getting back to me

Much appreciated and take care

David

1 Like

Hi David

I was on Gilenya for 2/3 years - had a break to have a baby and now am 4 months post my first Lemtrada infusion.

Gilenya didnt give me any side effects and kept me relapse free until I had a baby…

Lemtrada - I only had the first round in June so I am a newbie - but so far so good. No side effects as yet (but you have to be monitored for 6 years)

If you want to chat about either, just give me a shout. x