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    #1

    Hair falling out

    So, in general I should say that I like Aubagio. BUT my hair has started to REALLY fall out. I won't lose it all or anything, but after my shower today the hair that came out filled both hands and looked like a birds nest. I'm trying not to freak out. Anyone else have this and it ended up coming back???
    Also, and probably on a more medically relevant note - my WBC count has been steadily dropping at about .7 each 4 weeks. I am down to 3.1 and just finished month 4. Anyone else??? I'd really like to stay on this med because other than the hair loss I have no side effects.
    JilliO
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    #2
    Haven't noticed hair falling out but was thinning quite nicely on it's own before starting Aubagio.

    WBC count - have not experienced nor remember hearing this as a side effect, might want to ask your Dr. if it's a concern you should worry about.

    Comment

      #3
      Hi JilliO,

      You should call your neurologist about your wbc counts: https://www.aubagio.com/side-effects. This is something that needs to be monitored closely. Mine dropped too low on another DMT (Gilenya) and I wound up with life threatening infections (so not worth it).

      Please keep us posted. Good luck ,
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment

        #4
        Oh wow, Kimba. That's awful! The nurse who told me about my WBC results said doc would call me Mon or Tues to discuss. She said he wouldn't want me to get "dangerously low." How low is that? How low were your counts - and for how long?
        JilliO

        Comment

          #5
          Hi JilliO,

          Sorry, but I don't remember the exact number anymore. I know it was under 3.0, maybe it got as low as 2.7 or 2.6? But, my wbc counts were under 3.0 for a few months. I had a uti that quickly went septic, then the infection went to my heart. I was immediately taken off Gilenya. All the infections then caused a major relapse.

          I hadn't fully recovered from all of that, and had another bout with sepsis. The second time, I also had aspiration pneumonia and another uti (I don't think they could say for certain which caused the sepsis). Needless to say, it wasn't a fun time.

          Long story, but this all began because I was under the care of doctors who weren't my own, and results of my bloodwork were never sent to my prescribing neurologist. He was not at all happy when he learned how low my wbc counts had gotten, yet I was still kept on the medication.

          Some doctors find it acceptable for counts to drop lower than others, so it's always a good idea to know where your neurologist stands. Some doctors are also more knowlegeable than others about the effects of these drugs. Sometimes, changing to a lower dosing schedule is recommended, with the hope your counts improve.

          Good luck with your wbc counts and I hope they stabilize so you can stay on Aubagio! Keep us posted.
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment

            #6
            response to your hair falling out post

            I was on Aubagio on and off for about 3 months trying both strengths. I had to go off of it because I was having very bad relapses just within that short time. In addition to that (but not why I went off Aubagio) I LOST 60% of my hair! It came out by the double handfuls at a time. Eventually it stopped after I was off the Aubagio for a few months. But that's alot of hair to loss so it will be a long time to grow it all back. I did have alot of thick hair to begin with so it wasn't a matter of going bald just not as full and I guess if you didn't know me "before" you wouldn't notice I had lost 60%. But it was so scary while it was going on wondering if it would stop. And hearing the Aubagio people say your hair may start "thinning" and back then they were saying only less than 1% had that mild thinning. So I thought it was only a problem I was having. But when I started asking around to other patients on it I found out most people had this problem.
            It's so good to talk to other actual patients.

            Comment

              #7
              Originally posted by emily06 View Post
              I LOST 60% of my hair! It came out by the double handfuls at a time. Eventually it stopped after I was off the Aubagio for a few months. But that's alot of hair to loss so it will be a long time to grow it all back.
              Me too! It was so bad. I've always had thin hair that sheds easy but I was balding in spots. After 4 or 5 months I stopped it and used hair, skin and nails gummies to get it back.
              Be patient and tough; some day this pain will be useful to you.

              Comment

                #8
                I will be switching from Tysabri to Aubagio in maybe a couple months to several months because I became JCV+. I'm waiting to see how I feel on 6 week Tysabri infusions.

                I love my long hair, even though it's very fine, but I realize that having MS progress slower is more important. I figure if too much falls out, I'll just basically cut it down to nothing & wear scarves till it grows back.

                I wonder if any of you have the digestion side effect..... bathroom issues, weight loss issues & such. My tummy has its own mind as it is & I take 60 mg of generic prevacid everyday now & still have some problems.
                ~ There's nothing so peaceful as watching my pets sleep ~

                Comment

                  #9
                  re: digestion side effect

                  yes I had periodic diarrhea issues while on Aubagio - I stopped taking it early July and no more issues (moved to Lemtrada.)

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