Switching DMT: Hello. I am looking to... - My MSAA Community

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Switching DMT

kandykone1 profile image
21 Replies

Hello. I am looking to switching to Aubagio next month. Per my choice from almost two years on Copaxone. Neurologist is all for it.

I’m VERY scared to do so due to the side effects I’m reading about. Any feedback?

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kandykone1
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21 Replies
Iona60 profile image
Iona60

The aubagio side effects scared me too. I chose Ocrevus for it's efficacy and minimal side effects.

kandykone1 profile image
kandykone1 in reply toIona60

How’s it been going with it?

Iona60 profile image
Iona60 in reply tokandykone1

I'm doing well, nothing miraculous, but my MRIs are stable, and I've not had any relapses in the two years I've been in Ocrevus.

in reply toIona60

Good to hear this. How long have you been diagnosed for? I’m going on two years in March. Came out of no where.

vduckery profile image
vduckery

I’ve been on Aubagio going on 4 years. I had a headache for a few days, less than a week, at the very beginning but that’s it. No changes on my MRI the entire time. Hair loss....couldn’t tell cause I have a lot anyway. I went in it because I felt there were less side effects than many of the others I’ve read about.

in reply tovduckery

Are you still on it? I don’t know why but I’m concerned about the hair loss.

Neworleanslady profile image
Neworleanslady in reply to

I have the exact same dmt change happening and the same concerns and i wrote about it here very recently and got many great responses. I believe it’s titlled aubagio

in reply toNeworleanslady

Ok I will try and find it.

vduckery profile image
vduckery in reply to

Sorry I'm slow to respond, my emails are stacked up! Yes, I am still on it and I have a head full of hair. I love it, its so easy and I have had zero problems since the first week (headache) I took it. March will be year 4. I have no plans to discontinue Aubagio because it's working fine for me.

in reply tovduckery

Wow. You’re of the few I’ve read that had positive outcome. Makes me

Feel better. Glad to hear this! Not sure what I’ll

Do yet.

vduckery profile image
vduckery in reply to

I know others personally who have had success with Aubagio. Best of luck to you with whatever you decide.

mrsmike9 profile image
mrsmike9

I LOVE Aubagio!!! I had terrible side effects on my prior 2 meds and none at a with Aubagio. Easy to take, no more shots... Love it!

Neworleanslady profile image
Neworleanslady in reply tomrsmike9

That sounds great. Thanks for your reply. I’m gonna really hope for that

cookie12669 profile image
cookie12669

I have been taking Aubagio since July 2019. I have side effects. MY hair is falling out and I have diarrhea. I hate to be blunt but... I will stick with it for a while. I have other issues also. Recently had major back surgery. can't walk so good. I must wait and see how it goes. Good luck with the aubagio.

Like still falling out? Lots? I don’t think I can handle that. Diarrhea daily? This sounds awful.

GildaS profile image
GildaS

Just curious...why the switch from Copaxone?

kandykone1 profile image
kandykone1 in reply toGildaS

Shot fatigued already and dents forming. So it’s my choice. Which is the reason I question changing.

GildaS profile image
GildaS in reply tokandykone1

I completely understand shot fatigue. I was on Copaxone for 16 years. And the dents....I didn’t rotate injection sites enough so my waistline is not a pretty sight. But I did very well on Copaxone. (I quit taking it because I quit DMT entirely; I’m 68 and have been stable for a few years.) My only small piece of advice is, don’t give up on Copaxone just because of the injections without a lot of research into other meds.

Good luck. This is a hard decision.

kandykone1 profile image
kandykone1 in reply toGildaS

I’m 42 and super scared of what my future holds body dents/disfigured and what the MS is going to do. ITD ONLY BEEN 2 years and this is how I feel already. I don’t think it’s “not working” just wondering if there is better. But these side effects seem

HORRIFIC.

This feels like the hardest decision EVER. THANK you for your kind words.

Peruzzot profile image
Peruzzot in reply tokandykone1

My first DMT was avonex I was on that for only about 8 months and did not react well to it. It was awful as a matter of fact. Weekly self injections just made it worse. I got a new neurologist because of a major move, Italy to South Carolina, and he switched me to tecfidera. It's a twice daily pill. I've been on that for a little over 2 years now and only have flushing side effects at the beginning and one time I forgot to eat something before taking it and had a massive stomach for about 30 minutes about 30 minutes after taking it. I've not repeated that mistake again. Don't limit your options unless you have to. Some of the DMT's are off limits to me because of family history of cancer and those DMT's have a small chance of increasing your possibility of getting those cancers. After avonex I'm just saying no to needles unless it's an infusion I only have to get once or twice a year.

As for life's dings, dents, bumps and bruises the more you collect the better stories you'll have to tell later.😁🤔😁😎

GildaS profile image
GildaS in reply tokandykone1

About the dents....the nurse who gave me my first injection training had MS too, and she said that, despite the admonition to rotate injection sites, she injected primarily in her midriff area, because that’s the easiest place to inject. So that’s what I did. Just pop and go. Big mistake. However, after I became aware of the damage I had done to my body, I began to rotate religiously. (I’m lucky—my husband helped me do my arms.) I don’t have any lipoatrophy (I just looked that up) on my arms or thighs. It hurts a bit more to inject in those areas, unfortunately. I have heard that the generic version of Copaxone is harder on the body than the name brand, but I don’t know if that’s true.

So rotate while you weigh your options.

(By the way...I was injecting every day when I started on Copaxone, and it was much, much longer than two years before I began to notice the lipoatrophy. Maybe you are having problems with your injection technique. If you are taking Copaxone, Shared Solutions offers refresher injection education. I did that, and it helped enormously.)

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