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vixen
6 months ago

Hi @pschuy26. In the U.K. it has just been denied funding at the moment. For us in the U.K who are petitioning the government, can you describe your experience of it’s far? Am hearing good things, hope it’s going well for you. 🙂


pschuy26
6 months ago

Hello,
I’m so sorry that it’s been denied, based on what?
In Canada we have a very strict regulator , in the US drugs seem to get passed easier.
In Canada it was approved last September but for PPMS Health Canada approved it just a couple months ago in February .

I’m about to do the 6th month infusion on Tuesday so I’ll let you know how it goes. I had fevers for a couple days with the first and 2nd dose and was super tired. The first dose was the harder of the two.

My neuros describe this as a game changer as it seems that although spms is not mentioned in the trial she said I have aggressive rrms but older spms lesions and she feels it will work on both given it works for ppms. I asked her why because I haven’t felt a lot yet and she said my mri changes are already noted even though I can’t feel it working yet. She said it’s a longer term therapy and looking at 1 year or longer is better to see it’s effect but already noting the mri changes she said she is hopeful.

So the next infusion I’m hoping it calms my ms down. I’m in the middle of a relapse but she won’t give me steroids because Ocrevus infusion is on Tuesday and it’s a double dose.

For those reading this and for when it dose get approved in the uk remember to bring Advil as a preinfusion med because Tylenol is only med to deal with the fevers. My nurse said every Ocrevus patient she has developed a fever during the last 30 minutes of the infusion and on a go forward to bring my own Advil and take it 20 minutes prior to the Tylenol she infuses me with and continue it for as long as fevers are a problem. I continued taking Advil/Tylenol combination for 3 days.

Paulette


vixen
6 months ago

Thanks for your quick reply @pschuy26. In my research I have constantly come upon the expression ‘gamechanger’. So, Ocrevus has been approved by Europe recently, but the U.K. has said – initially – that it is denied on grounds of cost, subject to appeal.

I have RRMS and my sister was recently diagnosed with PPMS so we are both hopeful that it will be granted in the U.K. interesting that you can still be administered in the middle of a relapse. I hope you aren’t feeling too bad. All the best for Tuesday, sending transantlantic best wishes x


pschuy26
6 months ago

Wow, that was one of the reasons it was approved here. It’s half the cost of most of the other ms meds in Canada.

Hang in there, I’m sure it will be approved in the UK soon!

Thanks for your thoughts about my upcoming infusion. I don’t think being in a relapse is criteria not to infuse. If anything it should help bring me out of it .

Paulette xx


pschuy26
6 months ago

I was wondering who told you about not having Ocrevus during a relapse. I’m thinking about it and may reschedule because it makes sense if Ocrevus is tough on my system them having it during this relapse may not be a good thing.


vixen
6 months ago

Oh no, it’s just that I read a Shift post of another type of treatment that had been put on hold due to a relapse. It wasn’t Ocrevus. Different drug, different person, different symptoms. Your neuro will be right on top of it, all the best!


pschuy26
6 months ago

My neuro is thinking it over because she knows I’m already in rough shape from this attack and Ocrevus wasn’t easy for me to take. I want to be strong going into it as possible.


Anonymous
6 months ago

In the UK MS drugs are paid by the NHS National Health Service for patients, but this is funded by working people who pay taxes, also some funds are raised through tax on things we buy . MS drugs need to be good value for money for the UK goverment.
The US and Canada work on a different type of health care system, patients pay private health insurance. Some patients get some help but they need to contribute an amount.


pschuy26
5 months ago

9 hours. I had some problems with the infusion . Fevers yes but not as high.
I had itching on my face and in my ears and top of scalp and throat. I had a headache throughout, but it wasn’t too bad.

It took so long because they decided to give me stronger medicine fix infusions
Reactions. Soluderol ended up being 3x the rec dose .
They infused at a much slower rate too and left saline on the whole time.

For the next three days I have to take Benedryl , Tylenol and Advil .

All in all it sounds like a lot but it wasn’t really. I encourage everyone on this to stay awake if they can because self reporting is definitely best.


pschuy26
5 months ago

It was harder than the first infusions definitely but remember every experience is different.
Next time I’m dringing more water!

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