Ocrevus info.

[bavery207]

I recently went to an Ocrevus Patient Educational Program. The speaker was Dr. Clifford Reed with Tower Health System in Reading PA as well as a patient ambassador who had been in clinical trials for O since 2011 and of course the pharma. rep. I asked about the hair loss with Ocrevus and none of them had heard of that as a possible side effect. I also asked if there was any data available for older people taking O as the clinical trials only included people up to age 55. The Dr. had not observed any differences in his older patients, but had no facts and figures to support his observations. The rest of the meeting was info. we seem to know already.

[Jesmcd2 CommunityAmbassador]

Maybe ppl aren't reporting the hairloss bavery207 ? When my Ocrevus person (I forget what they are called) 😔 She didn't know about the fatigue. So everyone needs to report it!

Are you having hairloss? 🤗💕🌠

[greaterexp]

Thanks so much for reporting what you found out. I agree with Jesmcd2 that everyone needs to report any side effects, especially those that aren't listed in the literature. I guess that's true with any medication.

[jimeka]

Thank you for sharing. I agree that everyone needs to report the symptoms and side effects otherwise new comers to the treatment will not know what to expect. Blessings Jimeka 🦋

[CalfeeChick CommunityAmbassador]

bavery207 Thank you for the update on O. I agree with the Others, As patient and potential patients, we need to report side affects to our docs, but to us too, if you don't mind sharing. keep your spirits up! Please keep coming back.

[RoyceNewton]

I have no hair on my head so not a worry

[pamgarner]

thank you for info and going to event

[Juleigh21]

I have been to two dinners with Clifford Reed. I went to an ocrevus dinner 2 months ago in Lancaster. Have you ever been to any dinners with Dr. Thomas from Hershey Med? I’m signing up for 2 Mavenclad dinners b/c my doc wants me to consider switching to it. One is in Lancaster and one is in Harrisburg. If you want to PM me, feel free.

[bavery207 in reply to Juleigh21]

I have not heard Dr. Thomas. I live in Maine and seldom get to hear Drs. "from away".

[hairbrain4]

I have noticed significant hair loss also since starting Ocrevus. I also have low Thyroid & on meds for that which causes hair loss. It seemed that the hair loss has increased over the last six months. My first full dose was in April of this year.

[Hidden]

Hi. Ilike the word " bravery ", it is so so appropriate. Not that you ever wanted to be confrontated with this challenge! Anyway , I will start ocrevus in a month. Let me know about your experience. Hope to hear from You.