Just wondering

[diag1997]

Hello everyone. I posted a comment about hair loss while getting infusions on Ocrevus. I am hoping others have experienced this and then recovered. My post is under diag1997.

[rjoneslaw]

I don’t that but if you’re looking to get your hair to grow I can tell you what I did for my hair

My hair stylist told me to apply extra Virgin olive oil to your scalp every 15 days

[diag1997 in reply to rjoneslaw]

Thank you for the advice.

[Hidden in reply to rjoneslaw]

ANY oil will not promote hair growth.

It is a myth.

[hairbrain4 in reply to Hidden]

So very true!

[Fancy1959]

diag1997, it is Fancy. I have been on ocrevus for over 1 year now and have never experienced any negative side effects whatsoever. I wish I could tell you more but I don't have anything else to share because everything's extremely positive. Hope at least it helps that you hear back from people one way or the other. Take care. Fancy.

[diag1997 in reply to Fancy1959]

Not only are you Fancy but you are also Lucky. I am happy you have not experienced any side effects. Maybe it will get better

[jimeka]

Type in TMasonMckee he/she did a post on it. If you go to members, then type in that name, click on it and you will see their post about hair loss. Hope you get some answers, Blessings Jimeka 🦋

[diag1997]

Thank you!!

[greaterexp]

Welcome to our family! I hope you get some answers to your question.

[ssdw1958]

Hi I’m ssdw1958 I have been o Ocrevus for a year and a half I I have not lost my hair from the medicine but I do know I have a small area of hair loss. But than again I am 60 years old. Oh I said that you word again “old” hehe!!

[Bygonelines]

I am not on Ocrevous but I was worried about hair loss on Aubagio since it is a common side effect of that drug. My doctor has me taking prenatal vitamins and Biotin 10,000 mg pill per day. So far, no hair loss. Check with your doctor, maybe this could be a good option for you.

Jacqui

[erash]

I contacted Genentech before starting Ocrevus because several reported this. I spoke with their pharmacist. There was no evidence in the studies about hair loss but if it is a post marketing side effect, the only way they will be aware is if you contact them and they can document this finding from u and others.

I had noticed a little thinning around my temple but it hasn’t necessarily worsened since starting Ocrevus 4 mos ago and I’m 60.

How long have u been on Ocrevus?

[diag1997 in reply to erash]

I took my first half dose at the end of September 2018 and my second half dose on October 4th 2018.

My first full dose will be at the end of March or beginning of April this year. Pretty nervous about it.

[pamgarner]

I asked my dr.How can you tell is it ms or 64? his response" there are some things we will never know" can't worry about it,things are challenging enough/not just about hair but every new little thing.

[hairbrain4]

I am on Ocrevus. I go back in March for my 1st full dose. So far I haven't had any negative effects. But if you are having hair loss, olive oil won't do anything except make your scalp softer. If anything it could make it worse by clogging the hair follicles. Rogaine will help it go back but only if you keep using it. Once you stop it will quit growing. If you have access to a facial machine with the electrodes you can use those electrodes on your scalp rather than your face, to help stimulate growth. The other thing is the red inferred light. Being in the hair business for several years, those are the only two proven things I know will help stimulate hair growth, everything else is a myth. They use both of those machines on cancer patients that have lost their hair due to chemo. If you don't have access to either of those then you can go back to the old fashioned method of brushing your hair with 100 stokes. Get a cheap 5-row bristle brush. Start in the front of your scalp going toward the back by laying one side of the brush on the scalp and rolling through the 5 rows of bristles towards the back. Do that in sections all over the scalp. That will stimulate the hair follicle to some extent. You may notice your hair a little more oiler than usual because the sebaceous gland has been stimulated - which is good, especially if you have dry hair. It helps to lubricate the follicle. Follicles die for several reasons, dirty scalp, medications, cheap shampoos (drying to the scalp), tar based shampoos (T-Gel), dandruff shampoos and the natural progression of loss every five to seven years. I hope this helps.

[diag1997 in reply to hairbrain4]

Thank you for the detailed advice. I really appreciate you taking the time to respond.

[kycmary]

Hi my name is Mary I just started Ocrevus had my first dose in Dec. So far I haven't had any problems with hair loss but I'll holler if I do.

[JTZES]

diag1997

Ocrevus is derived from a strong form of chemotherapy. The medication is not used very much to treat cancer. The base medication has been modified to treat MS versus cancer. It has great results as a MS DMT.

Because it is chemo based I'm sure it could case mild hair loss.

[diag1997 in reply to JTZES]

If it is derived from a form of chemotherapy how can they not expect some people to experience some type of hair loss/thinning? Especially those with comprised immune systems.

[kdali]

I think I replied to your post before, any shock to the system can cause hair loss. Any dieting forum will have posts about losing hair. You can search keto and hair loss, low carb and hair loss, etc. and see what’s out there that people are doing to stimulate or support hair growth. There are lots of vitamins suggested, and some products you can apply to your scalp, I think Rogaine comes in a foam (but check with your MD on all those things).

I’ve not experienced this, so I’m sorry that I can’t be more helpful. I had a friend who recently got hair extensions and they made her crazy so she pulled them out, so be aware of this before you spend a lot of money. There is a crown type of extension she is considering.

[JTZES]

diag1997,

Not all chemo causes hair loss. It is based on how your body processes it. I'm just coming off of cancer treatment and the chemo I was on does not cause hair loss as a side effect but I noticed my hair became brittle.

I guess it becomes your choice of changing DMT'S or dealing with the hair loss.

[Juliew19673]

Yes! I have noticed hair loss. I started Ocrevus in May 2018, I'm 53. Luckily I have very thick hair, so not an issue for me yet.

[diag1997]

Thank you for responding. It helps to know I am not alone.

[ErinAtl]

I just took my third Ocrevus infusion and after my first treatment lost 50% of my long hair! As others mentioned it was not in patches, more overall thinning. It was heartbreaking. I heard and saw other Caucasian women with hair extensions and even though it is expensive and time consuming it is worth it for the self esteem. Even growing back it is just as thin. I just got an MRI today and even with my hair loss it is worth it! Since my last MRI a year and a half ago I haven’t gotten any new lesions and my lesions are now half of the size of my last MRI! All of this and only one treatment every six months- all in exchange for a little fake hair? I’ll take that deal and since I keep this fight private, nobody knows the difference😊

[diag1997]

Thank you for replying. I am happy you are experiencing good results from Ocrevus. I am starting a new oral drug within 2 weeks because I am at a stage where I don't get new lesions just progression of disability. My hair loss was clumps. I am not going back to that!