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I started abaugio last spring and I had high liver levels so much so that I was taken off of abaugio for the entire summer. I was put back on abaugio about 3 or 4 months ago and a few weeks ago started experiencing what I view to be severe hair loss I have a 3 patches my Neuro says they don't feel it's the abaugio because they called Genyme and Genzyme said no one has reported hair loss only hair thinning and that I need to hand in there. I have had to cut my hair down to a buzz cut and color it… read more
When I said something about hair loss they said it wasn't related to the ms
That’s the biggest problem to be worried about. There are a number of other MS treatments your neurologist can put you on since your body is screaming at you by higher liver levels and hair loss that Aubagio is not good for it. You have to listen to your body, it talks to you; not in words but feelings and in your case, losing your hair.
Thank you😊 and I didn't have any liver problems before the abaugio I was actually switched from copaxone to abaugio
Let’s be honest here, when I had one of my liver levels go high because my liver got injured from having influenza I had to fight my neurologist to stay on Aubagio. Do you have extenuating circumstances for your liver levels getting so high or was it strictly from the Aubagio? Yes, hair loss is one of the most common side effects of Aubagio.
So if your neurologist is telling you otherwise; you need to find another neurologist ASAP AND let them know at your first appointment you need to let them know exactly what the previous neurologist had you do and why. Ask why they didn’t just stop the Aubagio at that time. Me, I‘d be concerned that what I just did may have damaged my liver and voice concern about staying on Aubagio. Which means they’ll need to give you something to take to remove the Aubagio from your system faster because it usually takes two years for your body to do it on its own.
Your neurologist should never have taken you off of the Aubagio as a break and then start your dose back up again a few months later. It was probably still in your system while you didn’t take it just not as strong, but doing this may have damaged your liver doing the on, off and on again of Aubagio. I have explicit instructions to keep taking my medication and don’t stop for any reason. Be Your Own Advocate - stand up for yourself and be an active team member in your own care.
@A MyMSTeam Member It’s not related to the MS but can be a side effect of the MS treatment you’re currently taking. If it’s Aubagio then that’s a pretty common one that can happen. When your neurologist said hair loss wasn’t related to MS, did they bother to mention anything else like what I said? If not, are you sure this is the right neurologist for you? A red flag would be waving for me because I depend on my doctor to not just say “no” but explain why and she always does.
Do they treat you like a patient or a person? Think about it and if don’t seem to genuinely care about you, then it’s time to look for one that will. The first neurologist I went to thought he knew it all and I definitely didn’t feel comfortable with him after my first visit, so I went to someone else that did; it was just too bad he was so far to drive to. There was another neurologist I tried that was a shorter drive, but that one didn’t work out either so back I went to the second neurologist.
He ended up referring me to my current neurologist who is also an MS specialist and researcher. She is the most caring, genuine person I could ever ask for to put my life in her hands. She really listens to you and if you need extra time at your appointment, she gives it to you. As a patient, I wouldn’t have it any other way.
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