Results πŸ˜ͺ😭: Well im back rough day... - My MSAA Community

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Jackjosh profile image
Jackjosh
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Well im back rough day yesterday. Went to the doctors they said i cant be without meds cause i they said i have aggressive ms needed to be on a medication so they're going to put me on ocrevus while I'm waiting for my insurance to approve it they told me to stay on rebif I am so scared to be on ocrevus how is it getting it from yall's perspective

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Jackjosh
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Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Wish I had the words to take away your fears. Jackjosh I'm not where you are, as I've. Not had to change meds yet. But everything I've heard about Ocrevus is positive.

Did you talk to your Neuro about your concerns? If you forgot, email him.

Write your questions down. So you don't forget.

πŸ€—πŸ’•

J🌠

kdali profile image
kdali

We are in similar boats. What is it that you are afraid of? I’m worried about running out of shots before they get my infusions sorted out. I’m worried about catching all the yucky viruses my husband brings home from work, because I normally get them and now my already dumb immune system will be stunted. I’m worried that I will be wiped out and have to ask for help with my daughter for a few days. I’m worried that my manageable pain and symptoms now will be heightened for a few days. I’m worried that I’ll fail this drug too.

All those things can be dealt with though. Mostly likely my worry, and trust me it’s not keeping me up at night or anything, is for nothing. πŸ€·β€β™€οΈ But I’ve thought and shared my concerns, dealt with disappointment (ty everyone for listening!) and now I’m just waiting for my phone call, ready to get this done!

Jackjosh profile image
Jackjoshβ€’ in reply tokdali

I am worried I'll either fail the drug or who calls me to get PML and I'll die

Jazzyinco profile image
Jazzyinco

Jackjosh, are u jcvirus positive too? I think it's time to find out, cuz some of us Progressives & Agressives are, so, i'd ask for the test before starting the Ocrevus, do remember, tht itis fairly new. Do some real research on it, in the nationalmultiple Sclerosis society.org, i wish you Many Blessings & PrayersπŸ’ͺβ€πŸ’šπŸ’œπŸ’™πŸ’›πŸ˜»πŸ˜ΈπŸ™πŸ™πŸ™ please keep us posted whhat's happening k.---Jazzyinco

pamgarner profile image
pamgarner

I am going to have my 1st dose on July 16 wish me luck and check back

Jackjosh profile image
Jackjoshβ€’ in reply topamgarner

Hit me up when you can after

bavery207 profile image
bavery207

Jackjosh I have had the two half doses and one full dose, with the next full dose due Aug. 1. My first infusion I was wiped out for about 5 days. Since then I have not had any adverse reactions of any kind. We are all different and react differently to meds. But for me it is going fine.

anaishunter profile image
anaishunter

My 1st half dose was easy - no side effect.

I was worried about the time it would take for the insurance to approve but it came back within 72 hours with approval until 2099 (hope to be dead by then. I'm in my 50s). Hope this will be as straightforward for you. Let us know.

Jackjosh profile image
Jackjosh

Thanks for your comments they help some im still terrified

Linda3579 profile image
Linda3579

I’ve been on Ocrevus for over a year. I am doing ok. I’m not seeing much progression at all. I do get a headache after the infusions but it’s not very bad.

I have had 4 infusions. I understand your fears. I had all those same fears before I started. I had an appointment with my neuro at Stanford last week. He read me all the good new data on Ocrevus. It sounds very encouraging. I’m wishing you all the best of luck with this new drug.

Linda

greaterexp profile image
greaterexp

After reading so many positive things about Ocrevus, I think I would consider switching from Copaxone. Anything new is a bit scary, but if our current med isn’t as effective as it should be, it’s great to know we have options.

I wish you well as you sort through this. Please let us know how you’re doing.

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