My wife was diagnosed with PPMS 14 months ago and as yet she still hasn’t been approved for any treatment. We have been told all along about Ocrevus, how it was a ‘game changer’ for people with PPMS. We seem to have had to fight every step of the way, obviously the C-19 put the breaks on. She was called in today to see her consultant (unfortunately I was unable to go in with her) who has told her that it likely won’t help her and that the progression of her MS is something she needs to accept. He has advised her not to take the treatment as she wouldn’t be eligible for a C-19 vaccine (should there ever be one). My wife came out of the hospital in tears, the consultant completely contradicted everything we have been told for the last 14 months about this drug.
I was wondering if there is anyone on here who is taking Ocrevus who has PPMS? I’m totally lost as what to do other then request we are moved to a different cities care. We are currently looked after by Bradford.
Like your wife I have progressive MS so can see where she is coming from.
I looked the info and criteria regrading the wonder drug! and have to admit I would not touch it with a barge pole. My attitude is better the devil you know
Since my diagnoses I have noticed a marked lack of care from all dept., of the NHS so suspect I am classed as a third class citizen now.
This is exactly how she feels, we’ve been told different things at every stage. My wife is a nurse and has called them out multiple times when they have been wrong. he still hasn’t had any results given to her after 14 months. I was so angry yesterday when she came out, I really believed they we going to give some positive news.
Hi, I`ve had PPMS 22 years, so am wel past my sell by date for Ocrevus.
I thought it was for people who have had PPMS less than 15 years and are still able to walk. I dont know what else the criteria call for…maybe it wouldnt suit your wife, or help her.
And anyway, the side effects can be nasty so think of that as a positive.
There`s never been any treatment, other than symptom suppresants, for PPMS.
It can be very progressive, as it was for me…in a wheelchair within 2 years.
Live the best life you can and look after each other.