Ocrevus Envy

Hello

Hope everyone is good. I don’t post much as I don’t have much useful to add, but read loads of the responses and queries which have really helped me, so thank you.

I never thought I would have MS envy, but I realise I do :frowning:

It’s with Ocrevus…and the fact I can’t have it. I keep reading more and more of people being given it as first line option, even with fewer relapses than I had on diagnosis.

This is crazy reasoning I know, but the more I read, the more it is suggested that Ocrevus is much better in terms of long term improvement. I am worried my MS is lying dormant and will come back and might cause more long term issues.

I am so pleased for anyone who is on the very best drug for them, and realise Aubagio might be good for me, but I just can’t help feeling I am missing out on something even better.

Sorry for the miserable selfish post. I just wondered if anyone else felt the same.

Hi Dex, I do see what you mean, but when I read of some of the terrible side effects some drugs can give, I’m kinda glad I aint on any.

But on the other foot…

Boudsx

Thanks Bouds. I know I should be grateful to have been offered anything at all as some people have no option and some people choose not to take anything at all. I was on Plegridy and that made me so ill, the side effects were worse than the MS, so I know what you mean.

I don’t like being envious of something so potentially nasty, but with this horrid disease, you just want the most effecting thing you can get. I think you can read too much :slight_smile: I was OK when I though Ocrevus was for severe cases as I felt fortunate to not be there yet, but now it seems to be offered to many more newly diagnosed people and i feel at bit miffed!

I will stop moaning now, as my MRI results are due soon and they might show good news on the Aubagio after all. I think I am preparing myself for the worst and my brains all over the place!

Lockdown gives you too much time to think.

hi

you say seldush muserable post? i say refreashing honestyu

el

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Hiya Dexter. I don’t post too much on here either as, like you, I don’t feel I have much to offer. I just start a ‘rambling thoughts’ thread every now and again. Mostly to air my thoughts about whatever goes on in my head or just for my own amusement. Perhaps others might be amused too. Anyway…

I know what you mean by ocrevus envy. I was on Plegridy initially when my ms diagnosis wasn’t given any labels. Dreadful side effects made it impossible to continue with. Next try was Tecfedera. No side effects, however my progression was constant and it was apparent I have ppms. I promptly requested Ocrevus to be told the breast cancer diagnosis and treatment I’d had meantime, ruled out any possibility of being prescribed it. I remember tears welling up and feeling so damned cheated. These days I try not to waste energy on those thoughts and be grateful that I’m not as bad as some others are.

I can completely understand that - in your shoes I would feel the same. It’s one thing if a drug is only being prescribed for people whose MS is clearly worse than yours is, but it’s another thing when people whose circs seem similar to yours are getting it and you aren’t. Don’t feel bad about feeling grumpy - you have a perfectly good reason in my opinion!

Alison

I do get it too. The grass is always greener in the next field. The second bus always overtakes yours.

I was diagnosed and picking a treatment option after the results for Ocrevus were known and before the stately funding approval dance between the manufacturer and NICE. The daughter of friend was on the manufacturer team and was excited because it was probably the one time in her career when she would deliver a drug to market. I suppose it is like picking a share and sticking with it.

If I have to move, Ocrevus looks like a good bet. However, while the early bird gets the worm, it is the second mouse that gets the cheese.

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Thanks you lot xx. I was nervous to come back to read the replies. Chocorange Thanks for appreciating the honesty. It was a brain fart of a post really LOL and Poppy, goodness you have been through the mill! I really wish you all the best and you are right it IS wasted energy! Alison thanks for you support, but you make a good point, I don’t really know their circumstances and they may have other issues I am not privy too that makes it right for them. CRD, I really hope that cheese is a good one :slight_smile:

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I understand where you’re coming from, Dexter, but I’m one who was on Ocrevus and then dropped it like a hot potato. Maybe I can make you feel a little better. Over here, they apparently still only recommend it when you’re so far gone the other drugs won’t work. My neuro told me it was my only option, and he felt that I actually only had a snowball’s chance in Hades of seeing any improvement.

Anyway, I had all the stereotypical side effects during the first transfusion – I broke out into hives, my throat started closing over, and it all happened so fast I barely had a chance to react. I went ahead and got the second infusion with no issues, but after that I wound up with constant colds and sinus infections. Most of my teeth fell out. My ears clogged up for weeks at a time. I was on more antibiotics than I’d taken during all the rest of my life. It took a full year after that last infusion before I started feeling “normal” again.

I haven’t entirely given up on the idea of trying it again, but for now my neuro doesn’t want me to take it because of Covid, and I’m okay with that.

Oh Norasmum…what a carry on indeed! If it were me, I wouldnt want a repeat of that…

The criteria for Ocrevus here is you still have to be mobile and have had PPMS for less than 15 years. Is it same in US?

Boudsx

I really don’t know except that I had to be diagnosed with RRMS in order to take it. It’s not allowed for those with PPMS. The government doctor and I both believe the neuro gave me the lesser diagnosis on purpose so I’d still have a chance to try drugs if I wanted to but that I may very well be PPMS now. My insurance no longer covers it, so I’m not even sure it’s still an option.

On another note, the staff at Ocrevus is excellent. They called me several times to see how the transfusions went and to document the issues I had. They were very kind and gave me a toll-free number to call any time with questions or concerns.

Flip me, what a horrid time you have had with that drug! I’m afraid you’re right about UK neurologists sometimes not prescribing the big gun meds until the permanent disability horse has left the barn, but I have to say in their defence that they’re not all like that. By the way, have you and your neuro discussed Tysabri?

Alison