De-escalating from 14 mg to 7 mg Aubagio?

[DM0329]

Hi All,

As you may recall, I started on the full dosage of Aubagio last May 1, 2022. As the most efficacious dosage is 14 mg, I escalated to the full strength after starting on the 7 mg dose for a few weeks (working with my neurologist's CRN).

Well, one year later, my hair is extremely thin, has gone completely straight, and it appears that I have a thinning bald spot at the back of my head (center part area). I've cut my hair to a very short layered bob (chin length) and use volumizing products to make it look fuller. And I'm rocking a Pittsburgh Pirates baseball cap often. But this is just vanity.

On a more serious note, my GI issues are getting worse. It's almost fecal incontinance, like the urinary incontinance I sometimes have. But, I'm rocking Always Midrise Briefs to always "be secure." Thankfully, I'm fully stocked up when I go out, as I was always worried about the urinary incontenance.

My MRI's have been stable since 2004 (yet I have a lot of "stuff" on my MRIs). And, staying on treatments long-term is the best option, as medical science really doesn't know what to do as we age past age 65, and statistically, it's a varied lot of outcomes. And, I enjoy the simplicy of the once a day little blue pill

But, HAS ANYONE DECREASED their DOSAGE? I will suggest this to my neurologist when I see him on Monday, June 5. But, what does my MSAA Family suggest? Does anyone have EXPERIENCE with THIS downgrade?

As always, thanks so much for your input! 🙂🙏🤞

[ahrogers]

I have not taken Aubagio. I am an oncology nurse and know some of our long term oral cancer medications have to be dose reduced due to side effects. Seems reasonable you could do the same, especially since your MRIs are stable. I know there is talk about Ocrevus dosing and should people with larger BMIs be given a bigger dose. That should also open the idea to a lower dose for people with lower BMIs. For children we dose medicine based on their weight. Maybe we should do the same with people over 65 or 70 as kidney and liver function likely slow down a bit at a certain age.I hope your neurologist can provide the information you need to decide.

[DM0329 in reply to ahrogers]

Thank you so much for your learned response. It seemed quite practical to me; let's see what my neurologist advises! 🤞

[Robsmom]

I took Aubagio for a year also and had very thin hair the entire time. My MRI's were stable then had the worst exacerbation I ever had, I couldn't pronounce words. Saw a new doctor who put me on Ocrevus. I haven't had another exacerbation in 5 years.

[DM0329 in reply to Robsmom]

Thanks for your input. I'm so glad to hear that you're doing well on Ocrevus.

[hairbrain4]

Sorry you have had so much trouble. As a hair dresser/instructor I would like to advise you to stop using volumizing hair products. You are drying out your hair and scalp which only makes your hair fall out faster. Try using a moisturising shampoo & conditioner. Then get a 5-7 row brush. Every night & morning brush your hair for about 10 minutes or more starting at the front going toward the back using a rolling motion with the brush starting frome one side of the bristle rolling to the other side of the bristles. This will help stimulate the hair folicles. The other thing you can do is use a portable high frequency wand daily. This is the one I use. Use the comb attachment & comb through your hair while continually keeping the comb touching your scalp. Hopes this helps for at least your hair loss problems.

googleadservices.com/pagead...

[DM0329 in reply to hairbrain4]

Wow, who would have thought that my volumizing products are doing the opposite of what I want. Thanks for your suggestions and your link too! 🙂

[hairbrain4 in reply to DM0329]

You're welcome. I hope you can get some relief.

[Sandydemop]

i was on Aubagio 14mg for about 4 years. i didn't have the side effects that you have but i switched to something stronger when my walking/hand, etc got worse. The reason medical science doesn't know what to do when we get to a certain age, is because they only do research on people who fall into a certain age range. read the studies if you're interested. as for me, i don't intend to stop my medication as long as it's working for me. i don't have room in my life to have an exacerbation/relapse.

[DM0329 in reply to Sandydemop]

Thanks for your response. It seems reasonable to stay on treatment forever, too.

[Frances_B]

If Aubagio has been effective at keeping your MS calmed down it may be better to talk to your neuro about switching to Vumerity - it is also one of the fumarates but is known to have fewer gastric side effects.

mymsaa.org/publications/msr...

vumerity.com/en_us/home/abo...

With either taking a lower dose of Aubagio or switching to another drug there is a risk of your MS firing up again, but my guess would be that a lower dose of meds than that recommended could be more risky.