Aubagio - Second Try

[technogay]

05/06/13 - Day 1 of Aubagio retry. Stopped 04/15/13 after side effects started and my neuro seems to know nothing regarding this medication. So, I hit the message boards searching and researching the issues myself. It's now 10:24pm and so far no issues. Not surprising, same thing happened the first time. Praying retry will work. I'm out of options re. MS medication. Tysabri was working great, no side effects, balance issues better, no exaserbations. After 2+ yrs. positive JC virus results 3times. Having to stop Tysabri was a very sad decision to make.

[Alicious]

Hopefully it works out better this time. *fingers crossed*

[technogay]

update aubagio retry

Day 6 - so far no major issues. Some loose stool (gross), upset stomach, mood swings. Praying that it stays this way. First try all hell breaks loose on day 7. I'll let ya know.

[Alicious]

It's been a few more days--how are you doing?

[technogay]

still good

The only side effects I seem to have are sweating, headaches and stomach upset. Dealing with all and not stopping yet.

[Alicious]

Well, that doesn't sound fun, but it sounds manageable. I was on it for about 3 months, and the side effects of diarrhea, etc. definitely got better after about 6 weeks. Hopefully your body will adjust soon.

[technogay]

Disappointed - again

Started have side effects about 3 days ago. Stomach upset, dizzy spells, nausea, loss of appetite, periodic diarrhea, severe headaches. Spoke with my neuro's office just now
(5/17/13@12:47pm). Recommend:
Try taking Aubagio every other day, see if symptoms stop or lessen. Either call earlier or next Friday (5/24/13), with update. Will evaluate whether to stop Aubagio. If stopped will make appointment to discuss other options. Maybe give BG-12 a try?

[technogay]

Final Outcome on Aubagio

My second try was not perfect but tolerable. I read everything I could regarding BG-12 and Gilenya. Message boards and hearing from users is better than the company (they never tell ya the truth).
So, after much research and many discussions with my neuro's nurse (she knows more than the dr#, I have decided to continue taking Aubagio #every other day 14mg).
My reasoning is simple for me. I have always had major issues with medication, especially GI problems. Since users of BG-12 as well as Gilenya were having GI side effects, why bother.
It's been well over a month since this whole Aubagio issue started. As of today my system is getting use to it. My major issue is really bad bouts of sweating starting with a hot sensation throughout my body and then sweat dripping everywhere. Usually last about 20 mins or so.
Thanks for all your help and replies.

[Alicious]

Thanks for keeping us posted! I wonder what the mechanism is that causes the sweating?

Hopefully you ca make it work, but for what it's worth I had terrible GI issues with Aubagio (not as bad as you!), as well as other meds, but I haven't had a hint of it on Tecfidera. ???

[Michela11]

Hi technogay

What a terrible ride. I am currently on one too and am considering stopping Aubagio, but like you, don't have many options for DMD's.

Did you ever have any breathing issues?