Hair Loss and Tysabri?!?

[caprifly21]

Hello All,

Has anyone experienced hair loss with Tysabri?!? I am 25 and I have been on Tysabri since January of 2010. I was removed from Tysabri in February of 2011 because of a PML scare (a six month status migraine was really the issue) and started again in June of this year. I have always had very thick hair, however I have now lost 3/4 of my hair.

Though people cannot really tell I have lost my hair, I can tell. The clumps of hair in the drain after a shower or in a brush are undeniable proof! I have had my blood counts checked, thyroid checked, iron checked and all tests have come back normal. My doctor feels it is most likely the Tysabri though the Touch Care program has been extremely unhelpful. One girl I spoke with even had the audacity to laugh, LAUGH!!! Has anyone else experienced this?!? I feel like I am going crazy!!!

[pumpkin32]

hair loss

after#3 i had lost half my eyebrows, a ton of head hair, lots of leg and pubic hair. it was crazy, when i mentioned this to the infusion nurse she looked at me like i had 5 heads. its the tysabri. every time i would shower the drain would be filled, i actually has to have a plumber come and unclog the tub drain, half my head was down it! i ended up with liver damage so i quit it thank god. my gastro who is also my liver doc seemed to know more about the drug than my neuro and the infusion center. it also started to make my teeth go to pot, constant infections too. the so called partner the med place hooked me up with was no help, deny deny deny is their job.

[LL60]

I am so sorry to hear that Tysabri is making your hair fall out. And pumpkin, it sounds like all the bad that CAN happen with Ty has happened to you. I hope you can find something else that will work better with your body and get your MS under control. Hand in there, there is lots of things just waiting and stuff going on in labs all over the world. Sounds like at least your gastro doc knows about meds. Best of luck to you.

Caprifly, are there any other symptoms for you like there was for pumpkin? Some here swear by different suppliments that they take that makes hair stonger and thicker. Maybe try Tara message boards.

The fact that they laughed when you called about the hair loss. That is terrible. You can always fill out a thing on the FDA website for reactions to drugs. They kept track of that and actually encourage people to do it and not wait for doctors to. It did it for Copaxone when I kept hearing "I never heard of that happening". Well it did. To me. (I got septic and my whole abdoment got infected. I was on IV antibiotics and in bed for two weeks and had tons of just all sorts of weird awful things happened.)

For my daughters wedding I hired a personal trainer to loss some weight. And I did. And I loved being slim and so stayed on a heavy work out schedule while also not eating and lost a lot of weight and even got down to skinny. My hair was falling out all over the place. I gained back about 40 pounds that I lost, eat right and exercise some daily and my hairdresser and i are amazed at how thicker and nicer my hair is now.

Just threw that in there to see if anything else could be causing the hair loss. If not and Tysabri is the only new thing to come into your life. Then it has to be. And keep on it to see if it levels out if it is working for you or talk to your doctor about what else it could be. And next time Biogen does one of their check up on you calls, please tell them how you felt when they laughed at you. That is horrible.

[MSW1963]

Maybe this should be posted in the Ladies Room board, but since starting Tysabri my pubes have grown in after years of being a near baldie, darker color too.

My head hair has always been thick as 2 heads of hair and I have not found any changed since starting Tysabri. I normally do shed head hair to greater or lesser extent in winter since I was a child. I'm sheding a lot this winter, annoying hair on my dark witner coat.

I've experienced alarming hair loss from one of my neuro sx meds, (neurontin?). My hair dresser commented about all the new little hairs she noticed months after I stopped the medication due to an unusual alergic reaction.

[dizzy99]

Hair Loss

I have experienced hair loss from solu-medrol, but not from Tysabri. Before I started Tysabri I was having numerous relapses and having Solu-Medrol about every 3 months sometimes more often and it took a toll on my hair. I've also been on a medication called clonazepam for tremors and noticed at a dose of 2 mg per day hair loss increased. I've always had very thick hair as well. I research diet and vitamins and have been able to increase my hair thickness and growth to where it's pretty much back to normal. I also went to my dermatologist who suggested that I use Rogaine every other day which I have done faithfully and this has helped as well. Tysabri has helped me so much in reducing my relapses I'm not willing to give it up without a fight. Take care, I hope you find something that helps.

[Wren8]

Wren8

I noticed hair loss (only on my head) after the first infusion--not a lot, but noticeable. It's kept up at about the same rate for the past few months. Not so great for my vanity (or plumbing).