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    Hair Loss and Ty

    I am loosing my hair like crazy. Anybody else on Ty going bald?

    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    #2
    I haven't been on Ty but I've been on Aubagio and I'm losing my hair by the handful every day!
    Certainly some dr. type would have come up with something to stop our specific hair loss. I wish they would tell us!

    Comment


      #3
      Hi Lisa,

      No, I'm not going bald (yet), but I shed like crazy since being on Tysabri. So far I am lucky enough it doesn't show, but my "DNA" is just everywhere. Never had any problems with hair loss while on any other DMTs. The hair left in my wide tooth comb is sometimes alarming (or on the shower floor), especially after I've washed it. I began to notice this was happening around my 6th infusion.

      When I told my MS Specialist (whose been with this drug since it was in clinical trials) about it, he told me he was surprised and then asked me if I wanted to go off of it. I still have hair on my head (thank you mom and dad for very thick hair), but this brought back some memories of when I took a chemo drug for my MS (but still managed to keep my hair back then, too.)

      From what I remember, the exact opposite happens more often. I've also read some people have found it changes the texture of their hair, making it courser or finer. I found this http://www.ehealthme.com/ds/tysabri/hair+loss, where hair loss was reported 0.66% of the time. So, lucky us!

      Not many threads I could find here about it, but found a few:
      http://www.msworld.org/forum/showthread.php?t=115984
      http://www.msworld.org/forum/showthread.php?t=130920

      Things started to get a bit better and I thought I was finally rounding the corner with this, but turns out it's still an issue. I have added an iron supplement daily (have been also taking a biotin supplement since this began). Even after adding iron, my iron levels have been running on the low side of "normal." I also take a multi-vitamin with iron. So I guess there is something to it about depleting our iron stores.

      Seems to just be something I have to deal with for as long as I'm on the medication. As much as I hate the possibility of losing any more of my crowning glory, considering my luck with other DMTs, I plan to stay on it until either until I have to go off it or something better comes along.

      So, with that, I continue to use only one brand of non-sulfate, conditioning shampoo (it kept more hair on my head and found very little in my comb before I started Tysabri), cut back on how often I wash it (use a dry shampoo when needed instead), and am very careful combing it (using only only a wide toothed comb).

      Something else is I won't let anyone run color through my hair when my roots are done (which has never been a problem with the end result, but of course means it has to be the exact same color). I'm assuming I can only do that because of the shampoo I'm using. Otherwise, I'll just end up losing that much more hair.

      The only other suggestion I've been given is to see a Dermatologist.

      Good luck, it's distressing to realize we are losing our hair on top of everything else this disease dishes out to us.
      Kimba

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

      Comment


        #4
        Sort of just backing up what Kimba stated.

        I know we are Anemic from previous conversations. In fact mine is getting worse and I hit bottom again according to my latest blood work. They just upped my liquid ferritin.

        Hair Loss is a major symptom of Anemia. I'm not going bald...my hair is really thick. But I am shedding....I'm sure I will get there.

        You have had a lot going on Darlin'. We all have really. Just does not seem fair
        Katie
        "Yep, I have MS, and it does have Me!"
        "My MS is a Journey for One."
        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

        Comment


          #5
          Me too

          I noticed hair loss starting with Rebif and it continued with Ty.
          I can no longer wear my hair in certain styles. I also cut my waist length hair to my shoulders and have switched hair color to Henna, although if I do have to use commercial hair color I use John Freida (sp?) it's suppose to be more gentle.

          When I told my Neuro he had my thyroid tested, it was fine.

          Peace,
          Anna

          Comment


            #6
            The first 6 months on Tysabri I was freaking out I was losing so much hair. I actually thought I was going to end up using a wig. Then after about 6-7 months, it slowed down and basically stopped. I didn't use anything special it just stopped. Now 2 1/2 years later it's just normal daily hair loss for me.

            Comment


              #7
              Yeah thanks guys. I have been on Ty over two years. My neuro could care less about my hair loss, my Mom, on the other hand can, she is a hair stylist. She is going to cut my hair short (its naturally curly) and get me a wig that is curly like my hair as I have large bald spots all over my head. Lookin' Cra cra!

              Take care
              Lisa
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                Avonex was what affected my hair. It didn't thin too much, but it basically stopped growing. I think in 5 years I was on Avonex, my hair grew the same amount you'd expect in like one year normally.

                Now that I'm on Tysabri, my hair seems to have returned to normal.

                Comment


                  #9
                  i had hair loss with tecfidera, i'm new to tysabri so i'll let you know..

                  try some coconut oil capsules that should help a little bit
                  Jen Dx'd 5/11
                  "Live each day as if it were your last"

                  Comment


                    #10
                    The best iron supplement out there is Integra Plus. I couldn't tolerate any of them except liquid iron and it took forever to get my number up. This one caused me no constipation! And the ferritin number went up very quickly. And my hair stopped falling out!

                    I think the Tysabri definitely lowered my hemoglobin and hematocrit making me slightly anemic.

                    I love Integra Plus. It's absolutely life changing.

                    Comment


                      #11
                      Suppose this has something to do with why I started noticing my hair loss around 6 months:

                      "Following the repeat intravenous administration of a 300 mg dose of natalizumab every four weeks, the serum concentration reaches a steady state after 24 weeks."

                      http://www.australianprescriber.com/...36/natalizumab

                      "The mean half-life of the drug is 11 days but clearance increases with body weight."

                      I think being a lightweight has something to do with my hair loss, too. Now that I think about it, once I started to notice some hair loss, it would always eventually stop and things were fine until my next infusion. Of course when that stopped happening completely, wasn't too hard to take notice.
                      Kimba

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

                      Comment


                        #12
                        great resource i'm going to order this online. thanks! I too am thinning now, 2nd infusion and you can see the difference hair was super thick now its' already thin, flat.
                        Jen Dx'd 5/11
                        "Live each day as if it were your last"

                        Comment


                          #13
                          I was on Tysabri for 36 months and never experienced hair loss. Have your doc check ALL the meds you are on to see if another of your meds may be attributing to this. Good LUCK!
                          Live simply. Love generously. Care deeply. Speak kindly.

                          Comment

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