Last reply 4 months ago

Hi all, it’s fair to say I only post when I want a “rant”
Today I received a letter after 5 weeks of trying to get a call off one of my MS nurses ,

Unfortunately I don’t meet the criteria to be given they opportunity to benefit from this drug ( what they fail to say is your 57,to old )
I have PP MS, diagnosis about 24 months ago , non of the pain meds work for me , physio not that helpful.

Can I ask has anyone with ppms been put forward for this drug yet in the U.K. ?

Unfortunately for them I will not let this lie, not sure how though because I’ll risk breaking an already fragile relationship

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5 months ago

Sorry, posting from the US and 54 years old. Diagnosed about 15 years ago. Past DMTs of Copaxone (11 yrs) and Rebif (4 yrs) was just switched up to Ocrevus a month ago. The question my age never came up in the recommendation to change. My paperwork basically says that “since she is only 54 years old” inferring that an aggressive stance against MS should be taken due to how young I am 😉 I like that positive thought. Not sure how you can get a change in attitude ;-/ halting progression is pretty important to us…I understand your frustration and hope someone has some good advice of working through your health system which, looking from the outside, seems pretty oppressive. There are advocates here that are pushing for a nationalized health system. One of them being a friend that is a Dr in a rural farming community and I suspect she sees a lot of cases of people with no insurance as it is too expensive and only show up to her care when it is a big issue…and it is too late…and they have no insurance. I would hope for a solution where everyone has access to reasonable care that does not deny needed treatment that helps maintain individual well-being and dignity. A mighty wish to start the day…

5 months ago

@andrew4612 , have a read through this :-

Ocrevus is only considered for PPMS with a certain profile.

5 months ago

Hi Stumbler
I have to , from the first read it’s obvious that whoever wants to limit this therapy ,

The guidelines are open to interpretation, dependent if a trust does have or not the funds available

It’s took nearly six weeks to get this response, I never have a phone call returned from the MS Nurses , I don’t want to name the health authority yet , but very close

5 months ago

Hi @andrew4612. I have a feeling that there has not been enough data for over 55s, which might be a reason. But the main criteria is early PPMS which you have, and evidence of current activity on an mri. And EDDS of 6.5 or less. You must challenge it. My sister has PPMS and was turned down initially, but now set to have it. Put on your armour and fight!

5 months ago

@andrew4612 up here in Scotland O is not approved for PPMS yet ( until tomorrow hopefully). I have just been approved for O through an IPTR (Individual Patient Treatment Request) where your case goes infront of a panel regardless of cost for PPMS

5 months ago

Hi, I’m male, 49 with PPMS . I’ve just found out I’m eligible for Ocrevus treatment. I was diagnosed in August this year and my 2nd MRI in September showed no new activity. I have experienced one period of remission in the 4 years I’ve had symptoms and I think this may have something to do with me being given the nod. I would love to hear from others on this treatment to hear of their experiences.

4 months ago

Hi @andrew4612,

I am a 58 year old female and was diagnosed with benign MS in 2017. This has since become active with lots of new lesions on my spine. I am now classed as ‘active progressive’ MS (seen as a better descriptor than PPMS) and am eligible for Ocrevus as i meet the criteria – and have just got back from hospital this afternoon where i signed consent form.

Hope you get it sorted.

4 months ago

@stumbler you have to be careful what information you read online because a lot of it is garbage. RRMS has better results than PPMS in the pilot studies. Moreover Ocrevus was proven to decrease ms progression in PPMS patients. That’s why it gained FDA @ HC approval.

4 months ago

Hi all
Thanks for your posts , I’ve an appointment with the Consultant this coming Friday, that’s if they don’t try to pawn me off to one of his under studies (never seen the same one twice)
My GP has wrote a letter of utter dismay to the consultant over rejection of this drug.

I’ve been asked to request my medical records be sent to my GP and have them note this.
To be honest it looks like a second opinion is going to be required.

Again all thanks I’ll let you know the outcome maybe from a cell !!!!!!

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