OCREVUS: Hello all! I miss you all very... - My MSAA Community

My MSAA Community
5,485 members โ€ข 12,259 posts

OCREVUS

rlh1974
rlh1974
โ€ข74 Replies

Hello all! I miss you all very much. I just still have /am in a crappy spot. However I have switch neurons and they are putting me on Ocrevus because it is "normally covered by medicare and by the time I get my second dose, I will be on Medicare. So, In ty day to day thoughts. If once in a while you could think of me I would be most grateful..

Love you all,

Rob

74 Replies
oldest โ€ข newest

Good move my friend. I hope all goes very well for you. Have a very good day.

Rob,

I will keep you in my thoughts :) Just stop by and say hi every once in a while just to let us know how you are!

Stay Strong and Keep Smiling,

Carole :-D

yes, remember to stop by once in a while and drop a note, like the one you just made. I miss your posts and wonder from time to time how you are. Good move to Ocrevus as I think you will find great help from it. Be good to you my friend!

Ms-Indestructible I will be better at writing wore. I miss you all too!

Great to hear from you Rob. Hope Ocrevus helps you, Blessings Jimeka ๐Ÿฆ‹

Hi ya Rob. Good to hear from you buddy. I hope the Ocrevus works for you. Iโ€™ve heard a lot of things about it.

Good luck and God bless my friend.

Donnie

callyo60
callyo60
in reply to Doubled51

what do you know about ocrevus,my dr, wants to start me on it

Doubled51
Doubled51
in reply to callyo60

All I know is what Iโ€™ve read on this site but there are quite a few people currently on Ocrevus Iโ€™m sure they will chime in.

Donnie

rlh1974
rlh1974
in reply to callyo60

Well, for PPMS it is a stabilizer. I went with it because the trials were against Rebif as opposed to a placebo. So it was one for one. This is my last hope. After I start I want to get off my pain meds. So, we can just wait and see. I have had all my blood work and I am waiting to hear back from the infusion center for my appointment.

my dr wants to start me on this,im tryin to find out all i can before i start on it

there is a lot of information about Ocrevus on this site from members of this community. I suggest you do a search in the search bar [top right corner] and just type in Ocrevus. You will find all the posts regarding Ocrevus.

Hi, Bob

I havenโ€™t had the pleasure to read your posts. I do hope all goes well with OCREVUS. You are not alone. Blessings.

Tonyia

CalfeeChick
CalfeeChickCommunityAmbassador

I was wondering about you Rob. Feel better soon, both physically and mentally. We miss our friend๐Ÿ˜Š๐Ÿ‘๐Ÿ˜Š๐Ÿ‘

rlh1974
rlh1974
in reply to CalfeeChick

Miss you too!

Hiya Friend!! ๐ŸŽ‰๐Ÿ•บI think of you every time I open this app. Do you feel relief now that a decision has been made? I DO! Iโ€™ve been worried about you for months and jeez I hope this is IT! Plz let us know when your infusion is and what you think of it. You are loved and missed. ๐Ÿค—

rlh1974
rlh1974
in reply to kdali

kdali You are so very sweet. I have been working very hard saying yes to my family instead of hiding in my room watching tv.

kdali
kdali
in reply to rlh1974

Thats awesome! ๐Ÿ™Œ๐Ÿป๐Ÿ™Œ๐Ÿป๐Ÿ™Œ๐Ÿป๐Ÿ™Œ๐Ÿป I have a slight idea of how difficult that might be for you to do ๐Ÿค— Strong work, friend! ๐ŸŽ‰๐Ÿ•บโ˜€๏ธ๐Ÿ‘

rlh1974
rlh1974
in reply to kdali

kdali SO so great hear from you. PM me and let me se that little cutie of yours! Also, Like I said to Erash. I am so so sorry I don't plug in so much.

Rob

kdali
kdali
in reply to rlh1974

Will do! Iโ€™m starting to think you just like all the attention when you do post ๐Ÿคฃ

rlh1974
rlh1974
in reply to kdali

You are a total brat!!!!!! LMAO!!!!!

kdali
kdali
in reply to rlh1974

๐Ÿคฃ WHOME?! ๐Ÿ˜‡

rlh1974
rlh1974
in reply to kdali

kdali I swear we knew each other in a former life, if there was such a thing. LOL

kdali
kdali
in reply to rlh1974

Oh Iโ€™m sure of that, we were definitely siblings! Wanna pull my finger?

rlh1974
rlh1974
in reply to kdali

Buwahahahahahahahahahahahahaha!

CalfeeChick
CalfeeChickCommunityAmbassador
in reply to rlh1974

Sounds like me, I have my big TV, my big kitty, my laptop, my knitting, my crochet. Of course cell phone and house phone. My husband teases me that I practically have an office set up in the bedroom. ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜ป๐Ÿพ

rlh1974
rlh1974
in reply to CalfeeChick

CalfeeChick for me not so much an office but a lounge. If I could fit my sectional sofa down here. and a mini fridge. I wouldn't leave! LOL

Do any of the supplemental insurances cover Ocevus. Like F and G? Will keep you in my prayers.

Mary

rlh1974
rlh1974
in reply to Memc

Memc Medicare covers Ocrevus.

Memc
Memc
in reply to rlh1974

Thank you

Memc
Memc
in reply to rlh1974

Rlh1974 Dont they only pay 80%?

Mary

rlh1974
rlh1974
in reply to Memc

Memc I am sorry, i have no idea. One of the reasons I did choose Ocrevus, is because my Neuro had explained he had several patients on Medicare that it paid for it. So when my second dose comes around and I am on Medicare and not cobra. I know it will be covered. I wish I could be more helpful.

Rob

greaterexp
greaterexpCommunityAmbassador

You are missed. Iโ€™ll be praying for great results from the Ocrevus.

rlh1974
rlh1974
in reply to greaterexp

I would opt for a different DMD. I took the two half doses & it has me completely messed up. I am having to go to an hematologist & immunologist. Many are sicker from it & I believe a class action lawsuit is about to happen. Prayers.

erash
erash
in reply to Angie1976

Angie1976 pls share more about your experiences with Ocrevus and the class action law suit? Iโ€™ve also had the 2 1/2 doses and have had a very good response thus far. But I certainly want to know if there are potential problems. Thank you

rlh1974
rlh1974
in reply to erash

I have info I put together against rebif. If any of you want it. PM me with your email and I will send it to you. That way you can look at it side by side.

Memc
Memc
in reply to Angie1976

Angie what are your symptoms? Just got my first full dose. Canโ€™t say I have any bad symptoms.

Mary

kdali
kdali
in reply to Angie1976

Yes, plz share your issues and what the lawsuit is about! Ocrevus has given me my life back, Iโ€™m sorry for those is has not helped ๐Ÿ˜ญ or worse.

Memc
Memc
in reply to kdali

Curious how did O give you your life back

kdali
kdali
in reply to Memc

It relieved most of my MS issues and I donโ€™t have to worry or plan over my limitations much anymore. Iโ€™ve not been myself for 3 years now.

Memc
Memc
in reply to kdali

Wow that is wonderful. I hope it keeps up.

Mary

Diva1976
Diva1976
in reply to kdali

That is awesome:) It has just stabilized things test wise. As others have done. No improvements though for me. Glad to hear it has improved your aspects of life.

bellabutt
bellabutt
in reply to kdali

Hello I am new to the group. I have had RRMS since 1991. I have discontinued Gilenyia and will start Ocrevus on 12-17. My neurologist thinks the change wasnโ€™t warranted due to my stability on Gilenyia, however I insisted that I wanted to give it a try. I only hope that I experience the same as you. I will keep you posted.

kdali
kdali
in reply to bellabutt

I will be looking forward to hearing about your experience! Welcome to the crew ๐Ÿค—

rlh1974
rlh1974
in reply to Angie1976

Angie1976 Thanks for the heads up. My issue is, this is my last med. If this doesn't work I am screwed. So I will give it a shot. I have read things like that about several. It seems we as MSรฉrs are screwed no matter what! I will read up more on that though.

rlh1974
rlh1974
in reply to Angie1976

Angie1976 . That is terrible. I pray they get you sorted out and quick. That just breaks my heart. They really need a thumbs down icon for some of these comments. I hate to hear that any of you are hurting or are in a bad way. Remember I love ya, we all love ya and we are all praying.

Rob

Good luck Rob. I hope Ocrevus works well for u ๐ŸŒˆ

rlh1974
rlh1974
in reply to erash

erash Great to hear from you again. Sorry I stay away so much.

In my thoughts too. Wishing you all the best. :-)

Pray Ocrevus works for you ๐Ÿ™. Had my 1 year dose in early August. Medicare covered it. But my supplimental didn't. I haven't seen any results so they wouldn't cover it. Checking with other sources for coverage.

rlh1974
rlh1974
in reply to Yooper

Yooper go right to Ocrevus. that have financial aid. DON"T take no for an answer either. Good luck I hope you get relief physically and money wise too!

Rob

I will pray for you good luck

Iโ€™ve had my first set of Ocrevus. Dec is will be my 6 month dose . I have my ups and downs but as far as I can tell it seems to be helping me slowly but itโ€™s helping. As I said in my previous post my walking has improved 30% so I have started therapy now to strengthen back up my muscles. So far no issues . Good luck to you

rlh1974
rlh1974
in reply to Jj12010

Jj12010 Please keep us posted!!!!! Hoping the second dose flattens things out as opposed to ups and downs.

Rob

I have PPMS (DXED 5/15/18) and Ocrevus has worked for me without any bad side effects. I hope the same for you!!

rlh1974
rlh1974
in reply to Juliew19673

Would you mind sharing how it has helped. Because I also have PPMS Dx's 2014 Nov

I give it credit for calming down my bladder and colon; I'm not as exhausted as before, but that may be because of Provigil (not sure); spasticity is better (may be the THC or CBD) not sure. But overall I feel 70% better since mid July. So something is working and sticking around.

Juliew19673, could you please share with me the types of colon issues you were having? Or the types of things I might look for? I'm having a heck of a time. Thank you, Kevin.

I was constipated and was having to pee 15x a day, when 1st DXED and those conditions have gotten better since Ocrevus. I have not experienced any side effects, just improvements.

That must be nice! Finally some relief for you!๐Ÿ˜Š I have Neurogenic blabber, the thing is twice the size it it as a normal bladder. The thing is is dead! The top third I think Kind of works a little when I'm not sitting in a car, I have had to go #1 on the side of the house but that has been a while since my worsening symptoms.

Hi Rob,

Remember, once youโ€™re a part of the family, youโ€™re always family.

Good luck on the Ocrevus treatment. I am using it currently, but I have no idea if It is doing anything for me. PPMS, doesnโ€™t get better, so if itโ€™s slowing the progression, Iโ€™m good with that. I donโ€™t want to stop and find out it was working. I hope it works for you.

Craig

rlh1974
rlh1974
in reply to CraigS

CraigS That is what I have been told. I have PPMS, and the Ocrevus is supposed to keep us from the wheelchair for longer amount of time.

Thanks and take care! I appreciate the input.

Diva1976
Diva1976
in reply to rlh1974

That is something positive not to look forward too. So I will continue Ocrevus on that note. I'm already pushing a rollator.

Rob,

Good to hear from you. Hope all goes well for you. Please keep us informed.

Leslie

Hello Rob. Good luck with the ocevrus. I just started aubagio almost a month ago. I havnt seen any difference yet. I'll keep my fingers crossed for you.(mentally that is!)

villagegirl107 I was n Aubagio. That was one of the WORST experiences of my life! When I would take my dose I would end up with like 5 blankets and my wife on top of me trying to keep me from shivering. I pray it is better for you than me! Keep us posted

Rob

Wow Rob! That's awful! I have not experienced that at all! I usec to feel like that occasionally while i was taking betaseron and would forget to take ibuprophen with it.

you got it ! I am going for my 2 dose on monday I dont want to put a hex on my own deal but i got to tell you this stuff has made a change in my being able to walk and with other things i noticed almost when i walked out of the docs door looking forward to my second dose on monday? God big pharma and a good doc on that order go get em good luck

Hi Rob I hope your having a good day!

rlh1974
rlh1974
in reply to ssdw1958

ssdw1958 I am above ground. So it's a good day! LOL

Rob, I hope you are seeing some relief! I wish you well with Ocrevus and I'm thinking about You! I will be looking for updates. Not sure what the lawsuit is about but good luck with that Too! Take care!

Kevin

Kevin_McMillan I have just been approved through my insurance, so I am waiting for them to call and set up my 1st date. I also am starting a 21 out patient pain rehab. I do not fully understand what the difference is between that and PT. So I guess I will find out next week. I just need to get it all done by Dec 31 because that is when my insurance runs out. Then I have to wait until April to be eligible for Medicare. On top of that I can't drive and my mother in law. is moving in November 3rd. AHHHHHHHHHHHHHHH. So, even though (humbly in my opinion) have an amazing head of hair. My only physical condition that is still good. I may be bald by Christmas.!

Rob

Wow Rob, I'm sorry you may be sacrificing your hair! Lets hope it remains and you can feel good about that!๐Ÿ˜‰ I wish you the the best on all accounts And will be looking for updates! Take care.

Kevin

Kevin_McMillan I am glad you can share my sense of humor! Hope you are having a great weekend!

You may also like...