Ocrevus

[Scooterboo1973]

after only taking one infusion over half of my hair has fallen out and rest is brittle and damaged looking and color has even changed. I have lots of skin changes too. My Dr. Sent me to dermatology and they say they don’t think it’s OCrevus but won’t say it’s definitely not. They are being very mean trying to blame it on a diet, weight loss changes etc. I have not been on diet or had weight loss change. Throughout my life when I did I never had hair loss or skin problems so it is disappointing knowing they did this and did not tell me before and don’t want to help me now

[kdali]

There's an old post here about hair loss. I had "chemo hair" for years on it.

[Graip76]

Find another dermatologist. My sister has Sjogrens and suffered from horrible itching. The first doctor diagnosed her with Rosacea . She knew that was incorrect. Another didn’t know but the third diagnosed her correctly. (She had a sun allergy which sometimes happens with Sjogrens.) BTW her hair was also falling out and he gave her two meds for it. Good luck. Keep fighting. 😉

[Scooterboo1973 in reply to Graip76]

unfortunately I can only go to VA. I don’t have any other insurance so I’m at their mercy

[Graip76 in reply to Scooterboo1973]

Sorry. Hopefully they’ll change their diagnoses.

[hairbrain4]

I'm a Cosmo instructor. Have you had anything tragic happen in your life recently that has stressed you beyond belief? People have been known to have their hair turn white almost instantly when something tragic has happened. It's called Canities subita or Marie Antoinette syndrome. Stress will change your hair & skin, sometimes very fast or over a period of time. I personally had covid in 2021 & a month later my hair started falling out by the fistfuls. Then it came back in thicker & kinky curly. I had straight hair before covid & it hasn't changed since. When I was on Ocrevus it did make my hair fall out but not to the extent you are talking about but everyone is different. I hope you find answers. 🙏🙏🙏

[Neworleanslady]

i take biotin daily and my hair has been great. Started taking it when i began having hair loss on another dmt. Fortunately I haven’t had any hair problems on ocrevus but still taking biotin

[RTR1]

I had terrible hair loss after my 5 day steroid treatment. Everyone including MDs have attributed it to stress rather than the medication but I have my doubts as well. I just finished up my first two Ocrevus infusions and fortunately, I do not have hair loss this time. I am thinking about taking Biotin as well, I have heard good things....good luck to you and I hope the hair loss stops.

[MoparMom]

I've been on Ocrevus since July 2020. Have never experienced hair loss, although I've had Hashimoto's since i was 10 and have thin, fine hair my whole life My mom has used a hairpiece since her 30's and my sister (who does not have MS, but other autoimmune issues) has total alopecia since 2007 that has never returned, wearing a wig since then. She did have a very stressful period in her life right before this episode....I do believe our bodies do strange things that never recovers. I would not blame anyone for withholding info, in my mind those with MS may have a predisposition to these types of symptoms but not necessarily directly linked to Ocrevus. Have you had Covid in recent months? I know a few women who have had some hair loss and significant thinning after having Covid....after about 6 months it has improved but not back to normal. I would speak with a dermatologist to address possible treatment options or be conservative and try OTC vitamins at first. Good luck.

[Robsmom]

I've been on Ocrevus for 5 years and never had hair loss, but I also take Biotin daily after hair loss from taking Aubagio.

[PWilli in reply to Robsmom]

I also lost a lot of hair when I started Aubagio. Had to get a wig for my daughter’s wedding. My MS neuro denied it was the Aubagio…”I’ve never seen that before.”

[Robsmom in reply to PWilli]

One of the side effects of Aubagio is hair thinning, but it's only supposed to last one growth cycle. My hair was thinning all year.

[PWilli in reply to Robsmom]

I told her it was listed as one of the side effects and that did nothing to change her mind. I should’ve gone to see her without wearing my wig!!

[Scooterboo1973]

I been taking biotin and collagen all my adult life and vitamins and I say that’s why my hair was always so strong and thick and beautiful and the only thing that has changed in my life is this diagnosis of MS and the infusion I took. So going whole life with never having hair loss or skin problems I know it’s the Ocrevus. I’m devastated and so upset. I’m not wanting to take it anymore if I’m gonna be bald because of it.

[PWilli in reply to Scooterboo1973]

I used to take biotin but then stopped and don’t remember why. How much do you take?

[twooldcrows]

wow never had these problems....wow ...

[Redken007]

Dear Scooterboo1973, I' m so sorry to read that.I' ve been on Ocrevus since May 2020.Everything was fine and I remember the first infusion. The following day I felt as somebody infused me with a mega booster of energy-it was like a miracle.I never forget that feeling. Then after 6 months I noticed significant hair loss.I was devastated because it was so bad. I put myself on Biotin and even after 4 months there was no improvement at all. After 1 year it slowed down. While my hair loss continued I started having another problem - with my skin. I was devasted because it was so severe, inflamed,swallen and itchy skin.Once it also hitted my face.Nightmare. The dermatologist gave me some steroid oitment with a poor efect. Then I was forced to find another one and at the end I' ve managed to see oncodermatologist who eventualy helped me as she has a vast experience treating patients with similar meds for leucemias. Gave me a differet korticosteroids. She also discovered that my levels of vit Bs were so low and suggested to start to take vit B suplements. My hair over last2 months got a bit better although I' m still loosing it.So the dermatologist told me that hair loss is related to Ocrevus. I do not wanna change my MS treatment because I benefited from O in other ways much more - my swalloving problems got improved and also my walking as it was quite bad. Therefore I' m very grateful for this medication in general. So as already mentioned these days I' m on Vit B suppements and my skin is much better and no more problems.It looks as it has been solved completly.Well for almost 10 months since I' ve been on it.