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Losing your hair on Tysabri?

Hi folks, I've now been on Tysabri for 3 months and for the past 6 weeks or so I have been losing hair like CRAZY! My doctor says this is not a "known side effect" but I've been reading a bit and there are many people that seem to experience this. I'm sure it's not a "known side effect" because of some clinical inability to tie the medication directly to the hair loss in trials. I get that. But has anyone else here had this experience. It may sound vane, but this is devastating to me. I can handle the medication, I can handle the disease, but my hair is my thing. I have wavy naturally blonde hair and it's just my thing. So much of my identity is my hair. It wouldn't cause me to change meds because, other than this, I've had almost zero side effects from the meds and I LOVE the fact that I only have 1 out of every 28 days where I get treated like a patient with a disease. That's invaluable to me. But, MY HAIR! Sorry, like I said, I know it sounds vane, but I own it. Am I alone with this hair loss thing? If you experienced it, did it stop? Did it grow back? Did you use any products to help stimulate growth? HELP!!! :(

@rachhh , that's not vanity. It's your character, so I understand your concerns. I'm putting a link to a similar thread, caused by another DMD, but it may contain some advice for you. https://shift.ms/topic/hair-loss/ Otherwise, have a word with your MS Nurse. And, do raise the issue at your next infusion, they should know about these things.


@Stumbler Here in the US, we don't have a nurse that we see, we go straight to the doctor. My neurologist is an MS specialist (that's all he treats) and was actually part of the team that did the Tysabri clinical trials, so he'd know for sure whether it was a side effect. Looks like maybe they didn't see it in trials, or it didn't occur enough to be considered an actual side effect, so he isn't really wrong in telling him it isn't a side effect. Thanks for the link!