As I understand, Ocrevus is fairly new drug for the treatment of MS — a little over a year approved as I write this — and * Hair Loss * is not listed as a potential side effect. Yet, I’ve read quite a few stories of people suffering hair shedding / hair loss after their Ocrevus infusions. I’m one of those people. I had my two “half” infusions in July, and I’ve lost about a third of my hair in the last three/four weeks since the second infusion. It’s not a patchy hair loss — rather an overall shedding / thinning. But of course, it is alarming to see (hair simply falling away) when you’re not expecting it.
(?) How many of you all on Ocrevus have experience hair shedding and/or hair loss? (?)
— I rather treat the MS than keep thick hair, but maybe this is something the drug company needs to be alerted to. Also, there is some comfort in a heads up or warning that something like this might occur: “Some patients have reported hair shedding or hair loss while taking this medicine.” Or whatever.
Thoughts?
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TMasonMckee
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I'm sorry to hear about the hair loss. There can be many different reasons for hair loss. Were you stressed about the treatments before you started them? Worried about the side effects etc., or have you had any other changes in your diet, meds other than the Ocrevus infusions? Or even changing shampoo & or conditioners can cause hair loss. I wouldn't doubt it if it was the Ocrevus, but you also need to look at the whole picture. Right now I'm on Copaxone & it doesn't list hair loss as one of the side effects yet my hair is falling out by the fist fulls. I had recently changed from the 20s to the 40s injections. I don't think it's the Copaxone though, because I had an ENG and a colonoscopy two months ago & it was probably the anesthesia. Yet I had never had that problem before, but I was never 63 before either, I was in my 40's.
Never the less you should let your neuro know what is going on & when the rep from Ocrevus calls to see how you are doing you should let them know also.
I was in an Ocrevus support group on Facebook and there were lots of people complaining about hair loss from Ocrevus. There was discussion about calling it in to the FDA so that they can accumulate data on this as a potential side effect. My hair has been thinning for awhile but I’m also post menopausal so no idea which causing is it or if it’s both.
I've noticed that my hair Gray's faster, but that could be I'm 53 now. Haven't noticed any significant hair loss yet, and I am also just post the first 2x Ocrevus treatment so will keep an eye out.
I am PPMS so I no longer take a medication for MS. However, when I was first diagnosed they put me on Copaxon. I immediately started having hair loss. When I told my neuro, he looked at me funny and said it would have nothing to do with it. Funny after they changed my diagnosis to PPMS and took me off of it, the hair loss stopped!
I think some of these pharmaceutical companies (and doctors) are afraid if they mention the potential for hair loss, people won't take the medicine. However, I would have preferred to know ahead of time. It's scary to just start having half your hair fall out with no explanation. Even if it was just a quick warning, "While unlikely, some patients have reported hair loss while using this medicine." I would have been happy with that.
I was on Aubagio and lost sooooo much hair. Even tho they warned me and i thot “i have such thick hair it be ok to lose some” - it was shocking to me. So i stopped taking it. My neuro was not happy with me but. ... i am so vain with my hair. Thank u for the heads up cuz my neuro is suggesting Ocverus for me
It took 2 years but it finally came back in healthy again. Before that it was growing back in but it felt nasty. I have super fine, thick hair. Its awesome and silky. But it was growing back stringy and greasy like. Until the medicine finally came out of my system. Then it finally got healthy again.
It seems like the hair loss is not happening to everyone who take Ocrevus, so maybe you won't have this side-effect from it. Ocrevus seems to really help with stopping the MS progression, which is more important, I guess. It's not a total hair loss, just an overall shedding. I would estimate I loss about 1/2.
I either had success with the rogaine or as I neared the next infusion the hair loss improved. I just had another infusion. I’m still using the rogaine but minimally. There’s almost no where I need to fill in hair. If I start losing hair again I think I will be convinced it’s the Ocrevus recent infusion that has started the process again.
Any shock to the system can cause hair loss. I’m sorry you have lost a lot of your hair. There are people on dieting and bereavement message boards who post about losing hair and things they have done to help it grow back.
I’ve not lost any and I didn’t lose any on keto either, so I can’t speak to that. I do continue to take a prenatal vitamin 🤷♀️
Maybe I will try the prenatal vitamin. Like I and others mentioned, it's an overall shedding, so worse case, even if the fall continues each dose, the remaining hair will be thick and healthy, so the overall look won't seem so thin. At lease it's not a patchy hair loss.
I ended up having some success with rosemary essential oil. I read a study out of Japan that said rosemary oil had about the same hair-growth effect as Rogaine. I tried it (mixed with Coconut oil and Cedarwood oil) and found it actually worked for slowing the shedding and thickening what I had left.
Well, I just had my MRI and the Ocrevus halted the progression. So that's good. I tell myself that hair loss is a small price to pay to stop the damage that was happening to my brain. I did find some success with essential oils -- Rosemary, Clary Sage and Cedarwood mixture that I put on about 20 minutes before I showered. I had read a scientific report (about of Japan, I think?) about Rosemary helping with hair loss with the same percentage of success as Rogaine, which was why I bothered trying it. Like I said, I felt like it helped.
Can you please share you combo EO that you use i.e. how many drops and what carrier oil. If you can't share it on her please email me @ missymlm@yahoo.com. My hair is falling out bad after getting starter dose. I already had fine short hair now you can see my scalp through my hair its thinning so badly.
I think I personally went 20 or 30 drops of each essential oil (Doterra, the purest I could get) in fractionated coconut oil that I put in a glass spray bottle that way maybe 16 ounces. Or you can try Dr. Axe's recipes with is similar, but mixed with Jajaoba oil and/or Grapeseed oil.
I just joined and was told to read your post because hair loss while on Ocrevus was my big question. I have had my first two half dose infusions and I am shedding hair like crazy! My hair stylist even noticed. Thank you for letting me know that I am not the only one.
Me too. Same. My hair is coming out so bad and I couldn't figure out why this started. The texture is starting to get brittle and my hair is normally soft. It is thinning so BAD especially on top.
I stopped taking Ocrevus almost a year ago and my hair is starting to grow back. My hair stylist has become a close confidant after 15 years and her and I both comment about my two inch long hairs all over my head. Especially on top!! I feel like Tweety Bird. At least we can laugh about it. I am on a new oral drug called Mayzent. It is from Novartis. The same pharmaceutical company that makes Gilenya.
I had only taken the first split dose and within a month I was at my Neurologist's office. He said hair loss was not a side effect and I told him, "It is for me"!!!
I contacted Gentech and notified them of my side effect.
Hi diag1997 -- I just checked my email and saw I had a message. I apologize for the delay. Yes, I lost half my hair. The only thing that slowed it down (at least for me) was this weird recipe that I found involving essential oils. (I use DoTerra oils for purity and safety.) So in a small, glass spray bottle, I put one 15ml bottle of Rosemary essential oil, one 15ml bottle of Cedarwood essential oil, and one 15ml bottle of Clary Sage. The rest I filled with either fractionated coconut oil or grape seed oil. (I can't remember. It might have been both.) I shook it well. About twenty minutes before I took my shower, I would saturate my hair with this concoction. It didn't stop the shedding completely, but it did noticeably slow it down. The shedding finally stopped, but I'm not sure if that is because of the oil, or if the side-effect had run it's course. I hope this helps. <3
I have wigs but it's too hot for me to wear them in Texas summers
Yes they need to update and add hair loss/hair thinning! I've already called the company and asked and informed them about all the hair I've lost after completing my 1st dose... I've been on Many therapies over the years, yes on avonex and chemo I lost hair, but I went into that being aware, and being able to prepare myself for what was going to happen.
Yes I’ve noticed it to. My hair is baby fine to begin with. I’m using hair, skin, and nails by GNC it’s biotin and women’s rogaine. It should be listed in side effects
I completely agree I finished my infusion a month ago and just started realizing the effects that you said,hair thinning etc..(and I"m really young so no its not just a natural hair loss..
I'm sorry to hear this, Josh. My hair too. Let the pharmaceutical company know. Maybe if they get enough reports, they will list it as a potential side-effect and patients won't go into this blindly. It's alarming to suddenly start shedding hair.
Yes I’ve lost half my hair, I’m stopping Ocrevus and going back on Avonex although a mentioned side effect is hair loss I still never lost so much hair as I have had with Ocrevus and I’m not into wigs. I’ve reported it to gentech the makers of Ocrevus and I think if they tell people as someone else stated they won’t want to go on it. Very sad 😞
A nurse tried to tell me the same -- the steroids. But like you and missymlm , I have never loss hair on steroids before. I also called the company and really hope they will update their side-effects so people can be prepared.
I wonder as it is a new drug if they need "X amount of time" before they believe it to be a true side effect? But it is minimal (in me) so I would hate that someone would opt not to try it for that reason.
Yes, Roche should list hair loss as a side effect. Too many people report it to ignore -- although that is what they are doing, ignoring it. I reported it. When I did, the safety officer said this was the first they'd heard of it. I said "google it. There are thousands of people who experience hair loss after infusions." I'm guessing that Ocrevus users do report it, but that Roche chooses not to list it among possible side effects because it is a non-medical effect -- i.e. not important (to them). Nothing, in any of their literature even hints that there are non-medical side effects. I suspect they justify its omission for this reason. Sadly for all of us efficacy is not a drug company's main concern, making money is.
Ocrevus definitely causes hair loss. I have had two half doses and one full dose and after both infusions three to four weeks after I experienced shedding, itching, and thinning hair. It needs to be listed as a possible side effect just to avoid the shock of not knowing.
Thank you for your post. I found this via Google, as I have experienced a ridiculous amount of itching on my head and seriously hair loss - after two half doses.
Is this gonna start coming out in patches until my hair is gone? I think I’ve lost about half now. I have super thick hair and can barely double up a pony tail rubber. Now I can triple it.
Hello. I hope all is well. My hair loss was most in one spot. Prior to my second full infusion I began taking biotin 500mg per day and also I apply a mixture of castor and olive oil to the scalp to keep it moisturized. I believe that a combination of these things has prevented most if the itching and the hair loss. Since my last infusion 1 month ago I haven't experienced any hair loss. I hope this helps.
Hi! My hair loss was an overall shedding/thinning. Some of it has grown back, but it is super fine and whispy. The only person who really seemed to notice that presently (without my prompting the coversation) was a hairdresser. On my last haircut, she automatically pointed it out to a student/apprentice that some of the new hair growth/regrowth texture was different from my other hair and that all stylists need to account for the differring textures when deciding on styles and coloring, etc. I imagine I will never be able to bleach my hair ever again or risk losing the new hair as well.
The regrowth is baby fine on most strands. I too used to have super thick hair. I estimate I lost about half during those first three infusions, and only half of the half I loss grew back, but did so very thin like. So my head, in my opinion, has 50% normal, pre-Ocrevus hair, 25% thin post Ocrevus hair, and 25% permenant hair loss from the overall shedding that occured after two infusions.
Absolutely!Hair loss/ excessive shedding needs to be listed as a potential side effect. I have had a similar experience. Excessive shedding all over, visible thinning around edges and crown.
Along with changes to my nails- brittle/weak. My nails always used to be naturally long and polished now they are weak and peel before they can even grow out.
Also changes to skin- rosacea and heels of my feet are rough and peel.
We need to report the side effects to the FDA or they won't be listed and other potential users won't be fair warned
Oh, the rosacea. I always forget about that side effect. *sigh* I was more worried about the hair loss, but yes, I have rosacea now too— which was something I didn’t have before beginning Ocrevus.
Please let the Ocrevus people know. Maybe if enough people complain, they will list it. It's so scary when it just happens with no warning. I would have taken the Ocrevus even with hairloss listed as a side-effect, but I want to be prepared--not think something is seriously wrong because I'm losing hair and no one knows why. I imagine many people are scared like this. Even if they don't want to list it as an official side-effect, I think they should put a general warning: "Some patients have reported hair loss and/or hair thinning with this medicine." That way, when it does happen, patients aren't freaked out.
Sorry to hear about your hair loss. I experienced the same thing after the initial half doses (01/2020) but the shedding eventually stopped.
Due to the pandemic and people sporting all sorts of home-made hairstyles, it didn't stand out too much. And yes, the tweety bird description sums it up quite well.
As I am based in Europe, I will notify the equivalent of the FDA here, as they take patient and physician concerns seriously. By the way, hairloss is a medical condition, too, and physicians might start all sorts of tests to find a reason (that all came back negative). That said, I got this well documented. But the bottom line is: I can report that my hair sort of grew back. So please do not stress about it.
I do feel like the overall shedding has stopped for me as well, but I must also admit that my hair never did return to its previous fullness. It's looks fine, just thinner. However, I rather have the medicine than the thick hair. Ocrevus works for me. My MS progression has currently stopped. But as this message thread shows, hair shedding is obviously a side-effect -- at least where the first few doses are concerned. New patients about to undergo treatment should be notified, because to suddenly start losing hair is scary. Even if the company didn't add "hair loss" as an official side-effect that had presented during trials, they could at least put a note, like: "Some patients have reported minor hair loss, thinning and/or overall shedding that eventually subsides." I wish you the best in your treatment.
Hello TMasonMckee, thank you for all your posts re hair loss.I'm also the one who lost so much hair.And as you wrote couple of monts ago it’s not a patchy hair loss it is rather an overall shedding / thinning. The quality of regrow in my case is bad. I put myself on biotin a year ago but I cannot see any difference yet. I' m awaitting 4th dose in 2 weeks time but and I' m quite concerned about hair loss.To be honest I' m so pleased and thankfull for Ocrevus as a medication because it is working well and stopped further progression. I cannot imagine not to have it.
I appreciate the honesty of everyone on this forum - too bad the medical community isn't as transparent... I started Ocrevus in April 2020 and since then I have watched my hair, well, disintegrate. It hasn't grown in length. It looks trashed. Please understand, I've worked in the beauty industry since 1994. I use only professional products. I haven't chemically treated my hair in 15 years - so what I am experiencing is 100% Ocrevus. And now to top that off, my eyelashes are falling out. My regular doctor has done numerous tests to rule out any other things that may be causing this - and it is very clear, it is the Ocrevus. I am heartbroken to be frank. I know a lot of tricks to make my hair still look nice - but my eyelashes??!! No, no, no ... I was the rare, super lucky individual with naturally long, thick lashes that were the envy of many. Not any more. Aside from these nasty side effects, I've had constant eye infections that I have never before experienced (but at least those ARE on the list of possible, but rare side effects). Right now.. it's just too much for me. And I do believe that I'm going to stop using Ocrevus.
Wow, I was just about to ask about eyelashes here! I thought I suffered the effects of a lash glue allergy in Oct. they were growing a bit, and now I have a fancy serum that probably won't help, but some are still kicking the bucket half grown, which is 1/4 of the lash length I use to have. I have a cute bald patch in one brow 🙄, and have what I call "chemo hair". I had lost 40% when I tried a similar drug, and it started growing again when I went back to Ocrveus in October, but I'm thinking a short bob is my future. I look like a dog with mange. I do have eye issues during the first month of my infusion; styes, peeling, redness, and they are always red and sick looking. Ty for sharing!
Thank you for responding 🙂 I have "bald" patches in my lashes on both sides - couldn't even be symmetrical (one on the inside, the other on the outside). My eyebrows.... Those "bald spots" which were essentially the entirety of my brows, led me to getting them microbladed and tattooed. If it were just one thing, maybe two... I'd accept that. But all of them together leaves me feeling very self conscious, very un-pretty. I know how vain that sounds, but hey, take that and add a loping gait because of my drop foot and lack of balance, my stutter, and constant exhaustion... I'm sorry but I'm trying to find a balance I'm willing to live with and still feel like me. Which right now those scales are tipped towards stopping Ocrevus. I wish you sun and rainbows in your journey and every day.
Patches of eyelid with no lash hairs? I think that's a medical condition 🤔 I would probably ask my optho if I had that. I had my brows microbladed too and love them! Vanity yes, but should one really feel guilty for wishing they recognized themself 🤔 Thank you, and you as well! ☀️ 🌈
Hello... Believe me, I have seen my eye doctor and an eye specialist - along with all the other testing my regular doctor it was concluded that it was definitely a medication. Then when my regular doctor and eye specialist looked into Ocrevus, they were both confident that was the culprit. 😔 I wish I was having MRIs done before I am due for my next dose, but those aren't for month and a half afterwards. Even on Ocrevus, I still had new lesions at my last "photo shoot" - (my attempt at humor)... It's just so much to sort through. I still have time to decide what I want to do... But I will say that after stumbling upon this group last night, the amount of beautiful souls on Ocrevus who are experiencing hair loss... I feel a bit less alone, amazed at the strength and candidness of everyone... but still left with a heavy question. I'm so happy for everyone's progression that has halted - that's a cause for celebrating!! But I am not on that boat. I have some good days, or maybe good portions of days... But they are outnumbered by far. Thank you so much for sharing and your thoughts and experiences as well😊🌈🌞
I mean I think there's a word for it, not that that helps. Like a secondary autoimmunity because of the medication. Ty for sharing your visits, I have asked no one yet, but now I'm less suspicious that I caused my lash issues or I'm just old now. "Photo shoot", I love it!! I'm stealing that one 🤣 Still new lesions and no offer for a different med? I know what my next one will be, and I only have 2 options left anyway, but it also can cause "mange" (my humor), and months of fatigue that I'm not sure I'm up for with 2 littles. It is so much to sort through!! No, you're not alone and I'm glad you found your way here 🥰 I don't know what boat I'm in 🤣 but am happy to have some beautiful people here to paddle along with 🙏
It most definitely should. I've been on Ocrevus for 5 years now and my hair used to be really thick. I had the normal shedding once a year or so as they say. But I have been literally in tears for over a year because nothing I try is slowing down my hair from coming out. It gets worse and worse. Of course I'd never stop a dmt that's been working like Ocrevus has. But a side effect ahead time would have eased my pain.
Good morning!I have been on ocrevus for at least four years and never had a hair problem.
Then December 2021 I got Covid pneumonia and was very very sick. I was in the hospital and on oxegen. It lasted about 8 weeks and a month later my hair started falling out. I lost my ponytail.
I am very depressed about it.
I look horrible.
It is finally starting to grow again.
Check Covid hair loss. I believe that’s why I lost my hair.
I have experience hair loss as well. My stylist said that it was probably due to my blood pressure pills but I've been on those pills 17 years so I don't think it's due to that. For the past three years, I've been on Ocrevus I've noticed hair loss. I will be going to the hair doctor on Monday.
i noticed that my doctor uses 100 mg of methylprednisolone in the IV as premedication and as I searched it is also prescribed in the guide of ocrevus, so I think our hare loss is the side effect of hydrocortisone not ocrevus
Wow i had my last infusion june 30th. Since then i have to clean my shower drain daily. No patchiness just shedding. This is my 6th infusion and i guess i didnt notice it then. But it is a lot. also had covid in April so i thought it was that lasting effect. I will read the responses and see if more people have that happen. Good luck
That is how mine went. I started infusions and started losing hair -- overall shedding. I could run my fingers through my hair and ... it was alarming. It seems to have slowed up, but my hair has yet return to the thickness it was before the infusions. I rather not have MS symptoms, so I'm happy to take Ocrevus, I just think the company should put a note so patients won't be scared when it starts happening. "A small percentage of patients have reported slight hair loss." Maybe they think people won't take the medicine with that kind of side-effect listed.
I recently noticed a fairly large amount of my hair falling out, and I just turned 50. I thought that maybe it was my age or a genetic issue. My father and his father had fair loss as well. However now that I know other people are experiencing the same problems, it makes sense to me. Before this issue, I couldn't say anything but praises for the Ocrecus infusions. I think the FDA should be informed about the possible side effect. However I think I would choose to continue with Ocrevus and try other ways to help keep more of my hair. The convenience of twice a year infusions verses oral or self injection treatments is to great. And my life is as close to being normal ever before.
I've been on Ocrevus for almost 3 1/2 years now. Always had very thick hair, and actually started growing it out several months prior to starting treatment. No noticeable change to my hair thickness or loss. And I've had itchiness due to the water at home for almost a decade, so I can't attribute that to treatment, either. It is unfortunate so many people are experiencing this issue.
You are 💯 right!!! I have lost at least a third of my hair in the form of severe THINNING!!! I’m about to get my 3 infusion in January. I barely could see my scalp before. My hair was so thick, almost every man on both sides of my family died in their 80’s-90’s with some receding hairlines but everywhere else very thick hair… I also rather stop the progression of MS then have thick hair but I’ve had 3 new lesions since I started almost 18 months ago.
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Ocrevus/Hair Loss
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