Last reply 1 month ago
Never given a chance.

I have primary progressive MS, and have been trying for a long time to get access to ocreveus, they tell me you have to have recent activity in your brain or you will not get it, i feel my condition has worsened and surely this treatment is worth trying whether you have any brain activity or not, i believe all sufferers should get access to this drug. I did have an mri brain scan at the golden jubilee hospital in Clydebank on 11th August, so hopefully I’ll be successful.

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bernadette
1 month ago

@alex_bolland you can have Ocrevus first line if you have RR MS, so you absolutely can have it.
No matter what your scan of yesterday showed, you can have it ; I suggest you make it clear that you want it….
good luck


alex_bolland
1 month ago

I dont have rrms, i have primary progressive MS, its a different thing entirely, but thanks for your input.


itsmewithms
1 month ago

I started last year on O after being on Copaxone and Rebif after Dx in 2005. I have moved on to SPMS at this point and don’t really have attacks anymore but a slow steady progression…kind of like a slow air leak from a balloon…Over this last year my lower back has started to hurt. I’m also not working so not sitting in my desk chair but am actually more physically active so you’d think I’d be getting better. MRI shows no new lesions, no unusual atrophy or black hole expansion. But if you search for back pain and Ocrevus there are a lot of hits and a lot of comments on the Ocrevus FB site…so I am actually investigating if I should switch to something else. In the past I’ve always had an incredible back which is great as my right hip had to be replaced a few years ago likely due to the poor arch in that foot due to an accessory navicular being removed at 20 yrs old and dislocating my big toe in an auto accident. So – just sayin – it hasn’t been the wonder cure for me 😉 May look into Mayzent or Mavenclad, the other two options my neuro had put out there to consider


bernadette
1 month ago

@alex_bolland, NICE approved Ocrevus for primary progressive last year. There is a 3 point criteria you need to meet so your neurologist needs your scan result to make the decision for you.
I agree entirely with you though, how you feel clinically is more significant to you than any scan result, I hope your neurologist will take that on board. Scans are only one part of the picture. Fortunately my neurologist is very active about giving treatment.
Good luck


stumbler
1 month ago

@alex_bolland , I wonder whether @watsoncraig can offer any hints. He has managed to overcome the hurdle of being PPMS and obtaining Ocrevus.


vixen
1 month ago

Hello @alex_bolland. I think one thing is that Ocrevus is a relatively expensive DMT and so there is more pressure on authorities to adhere to strict guidelines. I’m not sure how old you are, but my understanding is that as a newish drug, there is relatively little data on people over a certain age. Our friend @dominics might be able to suggest, as he helped me word a letter to my sister’s neurology department regarding Ocrevus. Good luck!


watsoncraig
1 month ago

@alex_bolland yep as @stumbler mentions I have PPMS and overcame the hurdle. I mentioned it to my Neuro at Forth Valley Royal before the SMC ( our equivalent of NICE ) approved Ocrevus and he told me about an IPTR ( Individual Patient Treatment Request ) that can be completed if you meet the criteria of being less than 5 years diagnosed, under 57 ( why I don’t know ) and have active lesions ( detected by MRI ) .

Well my diagnosis was 4.5 years previous, was 48 at the time, as I was not sent for an MRI since diagnosis he sent me for one and they found new and active lesions, so the form was filled in and off it went to the board of the local health authority for approval due to the cost and lo and behold it was approved.

The power all lies with you’re Neuro to decide if you meet the criteria or not before the NHS will pay for it.

I have now had both half doses and one full dose and have not seen the wonder improvement some folk say it has given them but that is not both it’s purpose nor my desire (I would like to slow or halt the progression if I cannot repair the damage) .

Speak to your Neuro and highlight the process, pray they are not old school ( “oh you have PPMS so there is nothing we can do” as my old Neuro said before he retired) and see where it goes.

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