I was diagnosed with primary progressive ms in 2017. The drug ocrevus became available I had my MRI scan and because there was no new lesions in the brain I was refused ocrevus, then covid started and i finaly again had my MRI scan that I has requested for so long and my consultant has refused disease modifiying therapy ocrevus once again because apparently it shows no new lesions. I do not know what to do can somebody please help me all I want is ocrevus. I am on zero disease modifying therapy. Please can somebody advise me on how I can get this drug because I am very scared my condition is getting worse by the day. I can barely stand now and it’s not going to be long before I end up in a wheelchair. This has made me so depressed and I am already on medication for my depression since 2013.
Anybody with advice will be much appreciated.
Thankyou
It might be worth asking if you are suitable for this trial.
- ORATORIO-HAND (O’HAND)- Ocrevus compared to placebo
This phase III study is designed to evaluate the effect of Ocrevus on hand and arm function in people with more advanced disability, including those who use a wheelchair. The study will recruit approximately 1000 participants with EDSS between 3 and 8 and includes eleven study centres in the UK. The main measure of the study will be the nine-hole peg test, a measure of arm, wrist and hand function. A secondary measure will be onset of disability progression, measured by the number of participants with an increased EDSS which persists for 3 months or longer.
Estimated completion date April 2028.
Further details(link is external) of this study.
HI, as far as I’m aware, the criteria for getting Ocrevus is that you cant have had MS for over 15 years and must still be walking.
I guess your neuro has his reasons for not giving it . Mine told me the possible side effects were quite nasty. So perhaps that’s something to think about.
Boudsx
Hi
I was at the neurologist yesterday and spoke about ocrevus. I’m not sure I want to have it but am now going to have an mri to see if I am eligible then I can decide.
The criteria is there needs to be active lesions which is what the mri will show and be less than 6.5 on the edss scale (which I am).
It is crap that this is all there is for PPMS.
I would look at what medication you can get for the different symptoms- I’m on baclofen and gabapentin for spasticity and pain, use an AFO for drop foot - and am considering going private for a FES (you’ve waiting years in my area on the NHS)
Good luck
I have had PPMS for 14yrs. In 2019 I was told by my neurologist that I was eligible for Ocrevus, Covid hit and then I was told no. I want this drug too and I have emailed MSnurses this week to ask them to ask if the neurologist if he will reconsider his decision.