Any Long-term Aubagio Users?

[DM0329]

Hi All,

As you know, I switched to Aubagio (after self-injecting Avonex for 25 years) last year. April 2023 has been one full year of my new treatment. I enjoy the simplicity of the once-a-day pill, but I don't enjoy the side effects (hair thinning & loss, GI issues: bad gas, diarrhea).

My MRI's have been stable for many years, but MS is like a tattoo as it's always with you. My old neuro said that treatment is at least until age 65. So, I'm seeking input from any long-term Aubagio users.

I'd appreciate any input you can provide based on your experience. For example, how did you fare on tx (did it suppress MS activity)? What were your side effects? Why did you stop or switch from Aubagio? Do you have any tips to share when coping with MS & Aubagio therapy.

Thanks so much for sharing! 🙂🙏👍

[Sandydemop]

i did not have any symptoms from Aubagio, ie, loss of hair) was on it for about 4 years but i started to have more trouble walking and a new lesion so i switched to Mavenclad.

[DM0329 in reply to Sandydemop]

Thanks for your response. I'm glad to hear you had no side effects while on Aubagio, but I'm sorry that it wasn't a strong enough treatment for your MS.

FWIW, I changed to Aubagio the same year I officially transitioned into menopause (2022: 55 yo). Also, I've heard that menopause can cause an uptick in your MS symptoms too. Have you heard that as well?

How old were you when you had to change treatments? And, how has your switch been to Mavenclad? Is there any merit to increasing MS symptoms during menopause? Soo many questions Lol.

Thanks again!

[Sandydemop in reply to DM0329]

hi DM, i had menopause start when I was 41 which was way before i started Aubagio. my switch to Mavenclad has been very easy. 1 tablet a day for 5 days in Nov and 5 days in Dec. that's it until Nov 23. i went into Menopause before i was diagnosed. sorry i can't help you there.

[starlight5]

A year is a long time to put up with continued GI issues as you have. Have you spoken to your neuro about switching to a different dmt?

Had few menopause symptoms and I didn't feel it affected ms. Have been on ocrevus for almost five years after three years on copaxone which I stopped due to lipoatrophy.

[DM0329 in reply to starlight5]

Thanks, Starlight5 for your input.

FWIW I wanted to switch to an oral pill and to quit the shots (25+ years) but with the global pandemic, I was hesitant to switch to a more suppressive tx that made me "go outside" to an infusion center.

My MS and MRIs had been stable for years, yet my symptoms seem to slowly progress (ah, the nature of the disease, no?). But I know that staying on treatment is recommended (perhaps even after age 65?).

Honestly, I was afraid to switch to Ocrevus, as you have to go to an infusion center, etc., and I was shut in with Covid. My MS and MRIs had been stable so a "big gun" may not be necessary (my wishful thinking perhaps?).

I had been used to my weekly injections on Avonex and my switching to Aubagio has been quite easy. Occasional bad gas and diarrhea are more of a nuisance. And, I wanted the ease of a pill. I'm hopeful that it will keep my MS stable.

Aubagio seems to have a rather safe profile too. As I am now in my mid-fifties and on SSDI, my priorities have shifted. Hair is soo overrated (I'm rocking a shorter bob hoping to mask my thinning hair too).

BTW, I wonder if aging and menopause are causing some of my symptoms as well. Sometimes I tend to blame everything on MS, but as I age it's hard to tell "what's what."

Thanks again!

[Kenu]

I was on Aubiago for a couple of years with no side effects and been of DMT’s for couple years now and have stayed the same. I’m 67 now and still have the same problems but nothing worse. Having problems with dizziness and headaches lately but nobody knows if it’s related to MS 🤷‍♂️

[mrsmike9]

I was diagnosed in 2014. I started with Aubagio about a year later as I had bad reactions to the first two I tried. If I've had hair loss it's been minor. As to the gas and diarrhea, I do have that but it's because I also was diagnosed with collagenous colitis. When that is raging (like now) the only thing that helps is Pepto. I take 16 tablets/day, but it still takes forever to clear up. The previous time I was prescribed budesonide, but that's more of a Crohn's Disease med. That didn't touch it. So I stick with 4 pepto AM, noon, with supper and before bed.As for my MS? I've been holding steady with it. I feel different, like I'm very slowly getting worse, but nothing shows on the MRIs.