Ocrevus/Hair Loss

[Snickers1234]

Hello , I have recently been diagnosed with MS, I have just started Ocrevus infusion, first dose in August second dose in September. I am losing my hair like crazy. I have always had thick hair. I can't put it in a pony tail or clip. When I wash it, it comes out in clumps. I have to clean the drain periodically otherwise the water won't go down. I have asked my neurologist why this is happening she said that there is no write up about loosing your hair on O. She had my thyroid bloodwork tested but it is normal. I have been taking biotin for years. I eat healthy, take my vitamins , I don't know what else to do. Any advise? Thank you

[Angler_Eric]

Hello and welcome!

I've been on Ocrevus for years and I don't have this problem. And it really only means I don't have this problem. I'm sorry I don't have a better answer for you.

Have you called Ocrevus? They have been extremely helpful whenever I needed to call.

This is a great and supportive group. Hopefully else here will be better able to answer your question?

[Snickers1234 in reply to Angler_Eric]

Thank you for your support!

[mayestas]

I too just started ocrevis but I don't have any hair loss.

[Snickers1234 in reply to mayestas]

Thank you for getting back to me!

[jkdavid99]

I have been on O for about 3 years. The last infusion I was shedding. I also had covid at that time. I called my neurologist and he said he didn't think it was O. Then I called Genetech and they were supposed to add it to side effects. About 3 months in, my hair shedding stopped. Good luck and I hope it gets better. Definitely worth it though.

[Snickers1234 in reply to jkdavid99]

Thank you for your response. I put a call into the company. Waiting for a call back. I'm going to call again tomorrow.

[ahrogers]

Others have reported hair shedding with Ocrevus that usually stops after a few months. jkdavid99 I didn't shed with Ocrevus but did have shedding all 3 times I had Covid. Your hair loss could have been due to either, no real way to know for sure.I don't know if the hair shedding has been reported enough to be added to the package insert by Genentech. Even if they have added, it was done after it was approved so I am sure many neurologist aren't aware of it being a side effect.

[Snickers1234 in reply to ahrogers]

Thank you for your response. I'm going to check with my neurologist again to see if anyone else has mentioned about hair loss.

[Snickers1234 in reply to ahrogers]

I'm hoping it stops sooner then later. I can't even cook in the kitchen without wearing hairnet.

[ahrogers in reply to Snickers1234]

I was already a shedder so having the extra does cause problems in the kitchen sometimes. My husband calls me an Irish Shedder as a joke. I usually clip my hair in a ponytail when cooking.

[PearlRuby in reply to ahrogers]

I had hair loss before starting Ocrevus (1st in May 2023) I think it was from a vitamin deficiency. Blood work would confirm anything low, I only eat healthy foods now and recent blood work shows normal ranges. Hair loss is still there but not as bad.

[Snickers1234 in reply to PearlRuby]

Thank you for your response. My Bloodwork is in range. I do not have low deficiency. I really believe it is the medication

[Elizt3]

been on O since 2019 and haven’t lost hair. Hopefully it will ease up soon.

[Greentime]

That must be really upsetting! I am off DMTs, but shedding a lot. Age related maybe? I hope it stops in 3 months.

[Snickers1234 in reply to Greentime]

Thank you for your response. I hope so!! But in March I have to go for another infusion. 😡

[kdali]

I did not have any luck with hair vitamins, but do have a bottle a biotin to try again anyway, to lessen the shedding once I take my next medication (it's a problem with many meds/stress). What I have not done; Rogaine regularly, red light scalp "mask", or pricey hair/scalp serums. There are probably you tube views about hair growth gadgets with user reviews. There's a really long old thread here with comments about Ocrevus and hair loss, maybe there's some tips there that may help you.

[Snickers1234]

thank you for your response I will definitely keep on looking for suggestions, take care of yourself!

[Neworleanslady]

i am on ocrevus. I have light shedding but i don’t worry about it as much because my hair loss was so awful on this other dmt med i was taking a while back that this is like nothing to me.

Have you considered the pre meds they put in you before the ocrevus goes in? Steroids and benedryl (and im not sure if anything else) is what i get. Maybe your body’s not used to the other meds? Just a thought

[Snickers1234 in reply to Neworleanslady]

thank you for your response. I really do know what to think. It could possibly be from all the steroids that I was on plus what they give me at the infusion. It just very depressing.

[Mollyabigail]

Snickers, please forgive my late response. After my initial Ocrevus infusion in early 2021, I lost a good amount of hair. It seems to have slowed somewhat now. Given a choice, I will take the infusion over a headful of hair. Blessings to you as you begin this journey!