Hair Loss

[LostCupcakes]

I've had 7 infusions so far and I'm having severe hair loss. I had thinning hair on Avonex but now I've got a nearly bald spot on top of my head! I've always had long, thick hair (it was my best feature) so I am extremely upset. Is the hair loss caused by Tysabri or is it something else? The only other thing I take are 2 muscle relaxers and I don't think it's those. Or maybe it is, I don't know.

[Kimba22]

Hi LostCupcakes,

So sorry to hear that this is happening to you. I'd suggest having your thyroid checked first. Unfortunately, though rare, it could be from the Ty. I have some hair loss, too, on it. It was around my 6th infusion I started noticing it. I have a lot of (long) hair, but it was discouraging to lose handfuls of hair every time I washed and/ or combed it. It reminded me of the time I was on the chemo drug, Cytoxan. But, at least I knew I was only going to be on that drug short term. It's not real common with Tysabri, something like .6 % (ah, yes, note the decimal point ...)

My MS Specialist (who has been with this drug for close to 20 years, since clinical trials with it began) hasn't ever had another patient with this side effect. For me, at least, this has finally slowed down (around the 12th infusion). So, assuming my body is finally adjusting to the drug. I still have more hair loss than before Ty, but not nearly as much as before.

Try to eat a balanced diet and take a multi-vitamin daily as well, if you're not right now. Our hair will be the first to suffer if our bodies aren't properly nourished. You can also try using a sulfate free shampoo if you're not already, at least I found that helpful in minimizing some of my hair loss compared to a regular shampoo. (But, I would imagine you've probably already heard these things before, with your Avonex experience )

I hope if Tysabri is the culprit, your body adjusts to it so this becomes less of a problem.

Best wishes,

[Remy9111]

Get your iron stores (ferritin) tested. I got slightly anemic on Tysabri in addition to already leaning that way. Iron deficiency can cause MAJOR hair loss. As soon as I got my iron stores up (it is slow going) my hair completely stopped falling out!

This intense hair loss is called telogen effluvium which can be caused by stress as well. Usually the stressor comes 3-4 months before the hair starts falling out.

Try not to panic. It's hard, I know. This happened to me years ago from an antidepressant. My hair was thick and my best feature. I lost so much and thought I was going to go bald. I didn't! And once you find the cause (stress, medicine, iron deficiency) and resolve it the hair will grow back. I promise!! I was delighted to have little sprouts all over my head.

But the first thing to do is get your thyroid and your ferritin levels checked.

[palmtree]

Everyone has different reactions but mine was very different. After my dx I was on IV Solumedrol for the whole summer. Then started Tysabri. Meanwhile, I got an infection in my jaw bone and had to be put on IV antibiotics for two months. After that, half of my hair fell out. I don't know what caused it whether is was the steroids, the Tysabri or the antibiotics.

However, I've now been on Ty for 3 years and my hair not only grew back, it's twice as thick as it was before. My last haircut was in December and my hairdresser said it was so thick it was breaking the scissors. He cut off 4" and it's still below the middle of my back. I wish I could sell it because I don't need all this hair.

Hair loss is very mysterious. I've had massive hair loss a few times in my life with no clear understanding of why or why it came back. The only common denominator is that it has happened when I've been under stress and have started a new medication.

My guess is that your hair will come back. I wouldn't stop the Ty just because it came out. It could be the shock to your system starting a new medication and once your body adjusts to getting Tysabri, your hair will come back and maybe then some. I HOPE SO!