new medicine

[pamgarner]

i have recently been "upgraded" to secondary ms. has anyone tried the newish medicine Ocrevus?I am alittle nervous about an infusion that stays in your system for 6 months, gotta do something though

[Jesmcd2 CommunityAmbassador]

Hugs pamgarner don' be nervous. 😊 Many here are on ocrevus and I'm sure will be willing to share there stories with you. 🤗

One is our own Fancy1959 .

Also sry to here about the upgrade. They make it sound like a good thing😒😂

Where are you from?

Jes🌠

[pamgarner in reply to Jesmcd2]

I am from Alabama, Everyone has been so positive, I am going to start Ocrevus soon, just waiting on financing&scheduling. So glad I found ya'll pam

[Fancy1959]

Hello pamgarner from Fancy1959. I am glad you have found our awesome chat room. On to upgrade to secondary progressive MS about 2 years ago. The new neurologist I had originally started with wrote me off after about a year and said there was nothing more he could do for me as my disability had gotten too great. I switched neurologist to a incredible one called a partner in Hope by the national MS Society. He gave me back me my hope in beating this monster and he got me started on Ocrevus last year. I just finished my first full infusion last week. When Fusion is a breeze, the day after I was pretty done in. But by the following day I was feeling much better. Earlier this month I had my first MRI that showed no active old lesions on it and show no new lesions on it. What an accomplishment for me as that was my first clear MRI in the past 5 years. Yahoo! With that result alone I am putting my total faith in Ocrevus. Neurologist that got me started on it actually didn't much of the clinical research that got the therapy approved. He was very heavily involved in the trials thought extremely highly of the therapy. He has told me to stay with it because it is the best hope I have to beat this monster. He also said to give the new therapy time to work because the best results are seen two two two and a half years into the therapy. So I plan to go nowhere but to stay on the ocrevus this for the Long Haul. Unless of course something better comes along. And the way research is booming and new drugs are being developed the cure for MS might come along quicker than we all think. Until we have time to get to know each other better please take care and remember that together we are stronger in our fight to beat this dreaded monster we call MS.

[pamgarner in reply to Fancy1959]

that is fabulous news, you made me feel so much better! I am just waiting on financing. I have decided I want to live my life and not be side-lined, so I will try just about anything that will help ms. than ks for HOPE pam

[MS_Indestructible]

welcome to a wonderful site. You could do a search on Ocrevus up in the right top corner of this site to get more information and or user experiences. I've been on Rituxan a precursor to Ocrevus for several years now and love it. I have had some wonderful results with it ~terry

[Doriana]

I am currently on Ocrevus and have had no problems. I am going next month for my second dose for the year. Don’t be worried, you will be fine. Take plenty of things to entertain yourself with. As always drink a lot of water. I am addicted to water so I do not have that problem🤪

[greaterexp]

I'm sure you'll make an informed decision. I'm all for attacking MS aggressively to keep it at bay for as long as possible. Let us know what you decide and how it goes.

[agate]

pamgarner , it sounds as if you're thinking about Ocrevus but haven't yet discussed this with your neurologist or other doctor? If you have secondary progressive MS, Ocrevus probably won't be prescribed for you. It's for primary progressive MS (PPMS), which is a different type of MS, and for some cases of relapsing remitting MS (RRMS). I'm sorry if this disappoints you as this drug seems to be quite promising.

[erash in reply to agate]

agate my neuro says progressive is progressive and he's recommending Ocrevus for me (SPMS) even tho not approved for this

[agate in reply to erash]

I was wondering if that was going to be happening, and you're the first person to indicate that it is. That's probably really good news for those with SPMS like me though I'm too much of a wimp to try it myself. As you probably know, the earlier MS drugs were often prescribed for SPMS even though the drugs were said to be for RRMS only, and that 's how I happened to be prescribed Avonex and Copaxone. Some neuros are willing to prescribe on that basis--but I understand that others aren't. Good luck with the Ocrevus!

[pamgarner in reply to agate]

Everyone"s journey is different , my Doc. said I am a perfect candidate for this med, my old one stopped working, new lesions, Betaseron,worked for a few years , on to the new and different!

[Momjules]

I also just finished my first infusion of ocrevus and I appear ok.

I still have my side pain and back lesion pain. My new neurologist, who is new to me , won’t renew my pain pills . So out with him and I’ll have to find another one. This med hasn’t helped me yet but it’s only been a week so we will see.

Good luck with yours.

[pamgarner]

thx for replying,please le t me know how it's going for you, Still working on financing, but will be soon, this disease is a "PAIN" geeezzz

[Momjules]

Good morning

My doctors nurse called yesterday to tell me they decided to renew my pain pills. I’m very grateful.

When my pain is bad, it’s bad.

Hopefully this doctor will work out because I really did like him.

Now to wait to see how the ocrevus works.

A good day to all!

[pamgarner]

Me too with Ocrevus,I am sorry about your pain, it can get terrible. This disease doesn't seem to give you a choice to think or not to think about it. It's like the bad house guest that won't go away!

[RobertCalifornia]

I started Ocrevus a little under one year ago. No adverse reactions whatsoever. I have PPMS. I have not noticed any significant improvements but no declines either. My neurologist told me to give it two full tears before making any decisions. I have an MRI on Thursday and hoping for no changes or new lesions. Could not tell from last MRI because we changed to a new machine that gives twice as many cross sections as the old one..

[pamgarner in reply to RobertCalifornia]

thanks so much for info,you can stop taking a pill or injection in my case but the infusion makes me nervous, I hope your Mri is good news, MS. has a mind of it's own, I hope your new mri machine is quiet, we can only hope

[RobertCalifornia]

I take Valium. Have foam earplugs and cover my face with a towel. I need a driver but I have fallen asleep in the middle a MRI before

[WAshingtongirl]

Sorry about being ‘upgraded’ to SPMS. My neuro upgraded me nearly 2 years ago. She recommended I try Ocrevus, but I just learned that our new insurance (Tricare) won't cover it. If you decide to begin using Ocrevus, I hope you have no hurdles doing so. 💕

[pamgarner in reply to WAshingtongirl]

we are in the same boat.here is the telephone # of ocrevus, they may help you find funding for you, they are helping me right now. 1-844-844-627-3887. GOOD LUCK pam

[WAshingtongirl in reply to pamgarner]

Thank you!