Last reply 3 weeks ago
Ocrelizumab

Hello everybody,

I have had Progressive for 26 years since I was 25. I recently was educated on Ocrelizumab and got excited ! I do hope that I can begin on it. Please let me know how you people who are on that treatment are finding it. Thank-you, Celia

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watsoncraig
1 month ago

Hi, just had my first full dose of it and yet to see any benefits but hope they are happening inside and progession has been slowed


vixen
1 month ago

Hi @celia_foley, welcome to Shift. Yes, Ocrevus has been a great advance, although there are currently strict criteria around it. Make a start by contacting your neuro department and requesting an appointment. I imagine that as an ‘old timer’ with MS you don’t have regular appointments?


celia_foley
1 month ago

Good luck! good luck Craig Watson ! Well Vixen yesterday I heard from the MS Society that they will not be moving forward in my case, why ? you ask. Because I don’t have Insurance, they never even told me about it when it came out 3 years ago. Currently I do not have the money to pay out of pocket so will investigate and hopefully find a Donor/support. Yes I have once a year apps with Neuro. I am really disgusted with the way I have been so easily tossed aside, really because I am not injecting all sorts of moola into the Society. EVERYBODY is important. I will find a way, Wish me luck.


tomwilkins
1 month ago

I’ve had 3 full doses and after my last appointment doc said my cognitive and upper body reflexes were 50% better but unchanged with legs he said that was typical . A heat wave hit my area shortly after my last infusion (about a month ago) so it will take longer to see results


watsoncraig
1 month ago

Thankfully insurance is not an issue here in the UK


celia_foley
1 month ago

Curses Tom Wilkins, may the cool airflow come your way ! Great to hear though that you have seen some positive results.


celia_foley
1 month ago

Jolly good Craig Watson !


mlgilber1
1 month ago

I’ve been on it a couple years and have had no new or active lesions. It’s improved my walking and other symptoms. I’m not sure where you’re located, but if it’s an issue of price because of no insurance they do have an assistance program through genotech. They usually cover the cost and I know most people are usually left with a $5-$10 co pay.


amd7l
1 month ago

Hey Celia I’m on Ocrevus too I have ms since I was 13y. Now I’m 26 now. I’ve been diagnosed with PPMS since last year. I actually don’t feel any improvement yet but the MRI shows no new lesions.


itsmewithms
1 month ago

I’ve been on it a year. I don’t have any big gains although may have some little ones. There is an active FB group for Ocrevus that you can keep an eye on. I’ve been having lower back pain that I want to chase down and see if it is due to Ocrevus…could be due to several things but there are constant complaints about heavy legs and back pain in the group-


itsmewithms
1 month ago

I also meant to encourage you to check Dr Boster’s You Tube channel, he talks about many things but has great sessions about every DMT out there as well as what you can do beyond taking DMT. Some good self care tips for everyone. Good luck – also in the US so frustrating on our insurance and coverage issues I don’t think the rest of the world understands. I had to confirm what insurance a company had before I could accept a job offer from them…that is too much.


celia_foley
1 month ago

MlGilber1 I am in BC Canada, no I don’t have Insurance which is a chapper. A few days ago I emailed Genentech and asked if they had assistance, the emailed back and said that they do have Financial Insurance, yippee ! Thank-you for explaining it, so far did not know. I will need to get an app with my Neuro.
Glad to hear your improvements !


mlgilber1
1 month ago

@celia_foley I’m glad you emailed them! I’ve heard that they usually cover the entire cost or you’ll have a small co pay.


celia_foley
3 weeks ago

Holy cats ! I just realized that only progressive MS is mentioned, currently (I hope it disappears) I have secondary Progressive. I have left a message at Genenotech Ontario Canada and hopefully they get back with a positive response. Does anybody know for sure ?

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