Calling Former & Current Aubagio Users - My MSAA Community

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Calling Former & Current Aubagio Users

DM0329 profile image
15 Replies

FWIW, I started Aubagio 14 mg April 15, 2022. So, it's been nearly one year since I started this tx. I had been self-injecting Avonex (1997) since I was dx in 1994. I just started Menopause too. Ugh. I didn't realize that Menopause causes substantial hair loss too.

I love the simplicity of Aubagio yet the side effects have really been awful. The GI Issues and horrible diarrhea, etc. Has anyone stopped Aubagio at age 65.

My former neurologist said that MS tx stop at age 65? I will be age 65 in nine short years, can I give it up then?

Thanks for your input! 🙂🤞🎉

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DM0329 profile image
DM0329
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15 Replies
Sandydemop profile image
Sandydemop

hi DM, i was on aubagio for 3 years but switched because i started to have new symptoms. i did not have any side effects from it. Can you try something else? tysabri? tecfidera?

bettlebug profile image
bettlebug

Yes, I quit Aubagioabout 25yrs ago. I couldn't stand the side effcts any longer. I'm 78 now.

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Frances_B profile image
Frances_B in reply to bettlebug

Are you getting Avonex and Aubagio mixed up? Aubagio was only approved by the FDA for MS towards the end of 2012 so has only been on the market for less than 10 years.

Brindisi1 profile image
Brindisi1

No DMT after 65 conversation with Dr. Usually if stable, whatever that means. Personal decision. 65 is young relatively speaking

mrsmike9 profile image
mrsmike9

I have been on Aubagio since late 2015. Later I also developed terrible diarrhea. The latter is a completely separate disease for me. It's called Colagenous Colitis and is another autoimmune disease. The FDA recently okayed a med for that, but I found it didn't work very well. My 1st time I was going through a bout of it there was nothing available. The gastroenterology has me taking 4 Peptos 4 times a day. That worked well. (I need to start again as I'm having a flare.)

SaltyGirl profile image
SaltyGirl in reply to mrsmike9

I recently switched to Zeposia, that is also a treatment for ulcerative colitis. It cleared up some particular incontinence problems of my MS that I was having, and I left the shots. Getting close to a year with this new medicine, and overall, I like it. Best wishes for your healing, as we all keep trying!

mrsmike9 profile image
mrsmike9 in reply to SaltyGirl

The med I was prescribed was duloxotine. It's for Crones (sp?) Disease. Doesn't work for Col. Colitis.

Lady_Winifred profile image
Lady_Winifred in reply to mrsmike9

Duloxetine is an antidepressant that has pain killing benefits. It may be used for other things but that is all I know.

mrsmike9 profile image
mrsmike9 in reply to Lady_Winifred

Perhaps I am thinking of the wrong name.

SaltyGirl profile image
SaltyGirl

Oh, sorry. Good luck anyway.

Buddy2009 profile image
Buddy2009

I was on avonex in 2013 to 2014 but had to stop because it messed with my thyroid, then I was on Tecfidera for a few years, then tecfidera messed with my blood counts, so switched to aubagio, I have been on aubagio for a few years now and I am 66 and 3 months, I wont stop taking meds until my Doctor says its ok, I have some numbing in my feet and legs, it could be from the M S or part of it could be from bad disc in my back, so not sure if taken aubagio has made my symptoms any better or any worst , so Good Luck with whatever you choose.

OSU13 profile image
OSU13

Hi! I've been on Abagio since 2017. Fortunately, I don't have any side affects from the medicine. I've never heard of the 65 thing. Definitely, talk to your doctor and switch medicines if the affects are that bad. Good Luck!

Fannie6 profile image
Fannie6

Abugio didnt agree with my system I had a lot of sideeffects that didn't agree with my MS it was throwing me in reverse not being able to walk with my walker.causing my legs to tighten up so I got off of it & started Ocrevus which has really helped me greatly!

Gstrait profile image
Gstrait

Hi, my name is Leslie Grimm I've been on the Aubagio 7mg. since Oct. 2021 the only side effect that I have is the some hair loss. But the Pharmacist recommended the supplement Hair Skin and Nails. He really does help, and I'm real close to your age 54 will be 55 June 5th. Best Wishes

Will Keep You In My 🙏

Roamerwithroots profile image
Roamerwithroots

I'm new to this forum, so bear with me posting on an old conversation. :) I've been on Aubagio for 5 months and it feels like my stomach upset has suddenly gotten worse. I was on the brand name for 3 months and am now on month 3 of the generic. I noticed things getting worse in the past month. I'm curious if this side effect is ever going away because it's starting to be something I don't want to have to deal with for forever.

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