Avonex vs Ocrevus : Does anyone use Avonex... - My MSAA Community

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Avonex vs Ocrevus

Horse714 profile image
16 Replies

Does anyone use Avonex? I’m just wondering because I started Ocrevus but lost a lot of hair. Was wondering if some of you still use Avonex?

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Horse714
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16 Replies
SueAB profile image
SueAB

I used Avonex for years and constantly lost hair and it stopped when I quit taking it.

Horse714 profile image
Horse714 in reply toSueAB

I’m losing way more hair with Ocrevus.

Weldon60 profile image
Weldon60

I am currently taking nothing for my MS except vitamin B and D. You might check the side effects on the Occurvue, maybe the hair loss is temporary.

Horse714 profile image
Horse714 in reply toWeldon60

I’ve read other women are almost bald due to Ocrevus I want to go back to Avonex it helped me the most even though my white blood cell count was low I never got infections or had the possible risk of cancer or other malignancies like with Ocrevus. I stopped taking Avonex because I felt so much better I thought I just could stop without repercussions wrong I was now 62 I want back on it I see my neurologist in July and I’m gonna to tell her I want to go back on it.

IFwczs profile image
IFwczs

erash actually went to a seminar hosted by Genentech and asked specifically about hair loss on Ocrevus. They said it is NOT a side effect. (You can find her post, but I have pretty much told you what it says.) I am getting a second full dose of Ocrevus in August. It felt like I was losing hair more for a while, but we are supposed to lose hair naturally anyway.

Horse714 profile image
Horse714 in reply toIFwczs

I know they said it’s not a side effect but if you read a lot of women are losing hair big time and it grows in weird all brittle and bent it looks terrible. I called gentech and told them and if you read other post so are a lot of others, more women than men.

Horse714 profile image
Horse714 in reply toHorse714

P.S more than normal hair loss.

IFwczs profile image
IFwczs in reply toHorse714

I have not read or experienced that. Who knows what DMTs these people used to be on (like you or SueAB on Avonex).

Buddy2009 profile image
Buddy2009

I was on Avonex for a couple years, then it started to effect my thyroid, so I stopped taking it. I liked it only did a shot once a week, had some flu like feelings, was put on Tecfidrera but that messed with my blood counts,stopped taking, I liked taking that pill twice a day.

IFwczs profile image
IFwczs in reply toBuddy2009

What DMT are you on now?

Horse714 profile image
Horse714 in reply toIFwczs

Ocrevus

Buddy2009 profile image
Buddy2009

Not on anything right now.

Horse714 profile image
Horse714 in reply toBuddy2009

I became hyperthyroidism and they the doctor at the Cleveland Clinic gave me radioactive iodine and it got burned out. No one mentioned to me Avonex was the cause.

Cwacker profile image
Cwacker

I was on Avonex for a couple of years and experienced some hair loss and straw like hair. Had always had long hair and ended up continually cutting it to my ears. Avonex did not sit well with me, the flu like symptoms stayed for 5 days and when I finally felt better I had to take another shot. I got off, 2 years was enough.

Horse714 profile image
Horse714 in reply toCwacker

What are you on now??

Cwacker profile image
Cwacker in reply toHorse714

Sorry for the late reply...I'm not on anything now. After the avonex I was on the double blind trial drug siponimod, I was then diagnosed with spms. That part of the trial was discontinued and then went on Gilenya for a year and half. I started to have serious balance issues and my neuro said that the drug wouldn't prevent my ms from progressing. I started PT which helped significantly, but they tested me for the JC Virus at this time and I was positive, so I decided to go off of meds, that was about a year and a half ago.

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