OCrevus and hair loss

[Scooterboo1973]

I’m so upset that I with no warning am now in position of losing my hair. This is aweful. I don’t know if this has even helped. I have only had my first dose that was broke up into two and my first full treatment is supposed to be later part of June but I don’t think I’m going to continue. I’m hoping if I stop now my hair will replenish and grow back and I can find different treatment or medication. I just hope if I stop it now that my hair will come back and not have anymore problems with losing it. I never had hair loss before ever and now this medication is the cause.

[kdali]

Welcome! I'm sorry, it sounds like you are losing a lot? Mine slowly thinned and would grow again about 3mo after the infusions. There are some older posts here about hair loss and supplements or products people have used to help.

[DM0329]

Boy can I relate to your post! But, my hair loss is due to Aubagio, which I started in April 2022. I "feel your pain."

So, I got some really cute hats! 😅🙏👍

[Graip76]

I don’t know if this will help but my sister was losing her hair due to Sjogrens. She went to her dermatologist which gave her a couple of products to regrow hair. Sorry I don’t know what he gave her. ( We don’t communicate bc she thinks I am a bio weapon due to me getting a covid vaccine and that the cause of my PPMS is bc I have been cursed 😝😱) I have been on Ocrevus since 2021, 4 full infusions , and have not experienced hair loss. I hope a dermatologist can help you. 🙏

[Sandydemop]

Good luck with that.

[kycmary]

Hi sorry about your hair lose I don't think it has anything to do with Ocrevus, I heard lots of things about hair lose but didn't loose anymore than normal. I started my 5 th year in Dec. my hair is just past my shoulders the only thing that happen is it went to curly when I wash it & let dry natural. As for it helping your MS only you or an MRI can tell, there are several different types of MS DMT Meds out now & we know that we don't all react the same way. I hope & pray you find 1 that helps you! Mary

[IFwczs in reply to kycmary]

This is chemo. I think hair loss was listed as a side effect. There are a lot of us here who experienced it after Ocrevus. And what is your conclusion, that it has nothing to do with Ocrevus, based on?

[kycmary in reply to IFwczs]

I am sorry that you are losing your hair I am on Ocrevus also & I am not losing my hair yes I know that Ocrevus is classed as chemo. I think some are more susceptible to the chemo effect than others. Again I'm very sorry for your hair lose. I have been dealing with MS for 29 years now & on Ocrevus for 5 yrs now. I don't want to start a fight with anyone so we can forget I said anything please!

[IFwczs in reply to kycmary]

Thank you for your apology. I personally never lost hair on Ocrevus. But a lot of members of this forum have, and I am pretty sure my neuro mentioned this side effect. I stopped Ocrevus 2 years ago after a few years. I am glad it works for you.

[kycmary in reply to IFwczs]

Thank you I don't remember all that was said about Ocrevus other than an increased chance to get breast cancer! Thinking about it I do remember that. Again I am very sorry I opened my mouth before I thought & just because I have not experienced any hair lose I need to remember others did & do. So I do apologise to everyone. I love this site & all the people on it we have to stick together I believe that 1 day there will be a cure! Love to all Mary

[IFwczs in reply to kycmary]

Please don't apologize, Mary! I've always enjoyed reading your posts. It is just that Ocrevus for me, and many others, is a sore spot. It has nothing to do with you.

[Fancy59 CommunityAmbassador]

Welcome Scooterboo1973 to the chat room and our extended family. I hate to welcome you when your first post clearly shows your distress about your hair lost. I have been blessed never to have been bothered by any medicine I've taken. I've got the Constitution of a horse is what I tell everybody! Hahaha! It is my experience from using Ocrevus for several years that the 1st 2 doses are taken several weeks apart. I wonder why your nuerologist has delayed your 2nd dose so long ? How much hair have you lost? Have you talked to your dermatologist to see what they would recommend to regrow your hair? Then call your neurologist and express your concern to him and get his opinion. Even though we women and men love our hair your health should come before your hair. You don't want lesions to continue to occur in your brain or on your nervous system because that can lead to disability and once that occurs it is harder to get the nerve connections back. Have a serious talk with your neurologist and see why he put you on Ocrevus so quickly. Did you have an MRI to confirm your diagnosis with MS? Perhaps he saw a bunch of lesions already and he put you on Ocrevus to try and halt the advancement of those lesions. Please keep in touch and let us know what you decide. Feel free to ask questions anytime and we'll share our experiences with you and answer what we can but the best place to find answers for your MS and its treatments is always with your neurologist. Take care andunderstand that knowledge is power. And remember together we are stronger. Fancy59.

[Neworleanslady]

o hasn’t caused hair loss for me (knock on wood) but i take biotin daily(i started losing hair with one of my past dmts and started taking it then). I love what it has done for my hair so I’ve kept on taking it. It had been recommended by a hairdresser as well as a dermatologist

[Cwright170994]

Hi, and (unfortunately) welcome 🫂 I started ocrevus in June '21, being changed from copaxone because it wasn't working for me, as evidenced by 2 generalised seizures one night, one after the other, requiring hospitalisation.

I have a naturally thick head of hair, so I don't believe I have lost any. I cannot offer any advice, apart from not washing it every day. My mum's jealous. She had to take radio-iodine because her thyroid went out of whack when I was 12, maybe 13. Her thyroid stuff started when she was pregnant with my younger brother. The radio-iodine caused her to start loosing hair, and I would have seen more strands than usual if she hadn't kept her hair up. But, she's tried allsorts before she came to love herself with thin hair, and completing the course of iodine. Not to disappoint you, or make you feel bad. I think, if anything, stress from ms could have caused your hair to fall out. I don't think there's any side effects listed on the medication information sheet that says anything about hair loss. It would be good to speak to your neuro or ms nurse about it. Good luck in finding answers ❤️

[IFwczs in reply to Cwright170994]

Does your mom have Hashimoto's?

[Cwright170994 in reply to IFwczs]

She doesn't. Not sure if Graves Disease falls under the same immune causes, but she has had Graves. That also caused a goitre and bulging eyes. Our next door neighbour back then accused my then stepdad of DV against her. She had to have many blood tests to monitor her thyroxine levels, as well as a parathyroidectomy and a couple of rounds of radiotherapy just to bring her to where she can manage with medication.

[Tuliplover]

I wrote a long response and lost it when my phone died just now, but the bottom line is I too have experienced increased hair loss on Ocrevus. You are not alone! There are quite a few old posts on here about it. As kdali mentioned, my hair loss seems to slow the further I get from an infusion. I hope this helps. 🧡

[IFwczs]

Sorry to hear about your hair loss, but join the club. I stopped Ocrevus after my condition worsened. And many other people on this blog.

[Sagesewer]

I thought it was my imagination! Now I’m not the only one. My hair is 38 inches long. There has been way too much hair loss. I thought it was because I went from washing 2 times a week to 1 time that was the culprit.

Why is it that not only do we deal with this horrid disease and all it takes from us and out of us that we are robbed if a simple bright spot in our lives; our crowning glory?😡

[Sagesewer]

PS I’m right there with you. I’m so sorry. I took biotin for a long time. My choice, not a doctor ‘s suggestion. Not much of a help.

I wish I could say or do something for us all that deal with this garbage. Prayer is always the one thing no one or medicine can take from us.😊😘

[BlanketTime1]

i'm so sorry you're going through this.🤗

[KipAngCan]

Hi! I’m experiencing the same issue but it is with Mavenclad. I took 4 infusions of Ocerevus and didn’t really notice hair loss but when I switched it started. My Mavenclad nurse indicated that it is a recorded side effect but eventually it slows and stops. Mine has slowed down and as I’m now finished with my 2 year round of Mavenclad, I expect it to really slow down. It has been growing back as evidenced by shorter hairs now appearing. I hope it slows and stops for you. I’m going to start biotin now that I’m done with my dmt. This disease is so ridiculous with everything it takes away, hopefully this can be successfully combatted.