I don’t understand why you don’t hear much in the way of possible treatments for PPMS. You hear quite a lot about possible treatments for relapsing remitting but very rarely do you hear about PPMS and then when there is a possible treatment is gets rejected on cost. Perhaps the people rejecting it on cost or setting the extremely high price would like to experience life with PPMS or even the life after PPMS because no treatment is available.
My husband was diagnosed in 2001, he was slowly deteriorating and walked with sticks for years. When we were in Spain he was put on some medication that helped slow the progression, when we moved back to the UK he was taken off of it because they said it wasn’t safe long term and within 6 months was in a wheelchair, obviously we don’t know if that would of happened if he had stayed on the medication but I feel unlikely as he had been on it for years. He has been left to deteriorate because he couldn’t have stem cell treatment unless he went aboard, and other treatments not suitable or considered suitable for PPMS.
My husband is totally dependant now, he can’t move, fed via a peg tube and lost the ability to communicate. We care for him and love him because he is my husband, a dad, a son and brother etc. These people deserve a life made better by medication or treatments so why do the likes of Roche make it so expensive and why do NICE refuse it, why can’t they work with the NHS because these are peoples lives, family members and they do deserve treatment if it is available.
Ocrevus is the first proven medication to slow progression of disability and even if NICE eventually agree to it, there’s no guarantee all of us would get it.
My current EDSS is 6.5 (not full time wheelie but need crutches to stand) so I guess that means I’ve missed the boat.
I think as PPMS has no other proven DMD’s, whilst we may need multiple meds to cope with our symptoms, we don’t need DMD’s so ANY drug is unlikely to be a cost-effective option to NICE.
In clinical trials, Ocrevus was found to slow the progress of disability in primary progressive multiple sclerosis (PPMS), which accounts for approximately 10 percent of MS patients.
This is a big issue for many of us, and the lack of comments here says it all. There is supposed to be a ‘Progressive MS Alliance’ but we don’t hear much. PPMS is just a forgotten illness that destroys lives silently. And the real kick in the teeth is that when something does come along the medics and regulators seem to strain every sinew to not prescribe it (in the UK). Cynical me says that because there is no treatment ‘available’ then PPMSers are really cheap so any new treatment is way more expensive than nowt, so can’t have it.
Sorry for the downer, but I would love somebody to prove me wrong.
Well said and wish I could add something positive but as someone who was diagnosed with PPMS in 2011 and was waiting (nervously) for NICE to make a decision, it was, as you say, a real kick in the wotsits.
I cling to the hope that either NICE and/or Roche can find a solution or something else comes along before it becomes too late because we’re now “outside the criteria…”
Wish I could say more positive but I agree the more who can add their voices to this, the better our chances can become.
Have a great New Year and I’m not religious or anything but keep the faith.
I agree …after a diagnosis of PPMS with no hope …to have a little glimmer of light, waiting patiently yet progressively for ‘O’ for years (2015) … then for NICE to simply say no and snuff out the light beggars belief! If PPMSers were the majority rather than the silent minority the whole approach, be it MS Society/NICE etc would differ…they do their very best to batter your belief but hey don’t let them grind you down…it is a new year and all…
I like Higgs comment about if the situation was reversed then…
At the risk of criticising the Society, click on the homepage under research and then latest research and scroll down to progressive MS and the date of the last entry/news was 3 years ago!
So who exactly is carrying the torch for those of us with PPMS?
Yes the progressive MS Alliance is commissioning lots of projects to do research and one hopes they’re all joined-up but just keeping up with who’s doing what can fatigue you:)
NICE jotting an equation on the back of a napkin showing that the anti depressants for those with no hope is much cheaper than offering ‘O’ to those that could well benefit.
Meanwhile the MS Society continue their blue sky thinking ensuring any MS media exposure is super positive …
At the very least you’d hope that they’d piggy back on the nations new favourite …‘mental health’ band wagon. Doesn’t having this condition, with the one potential hope denied, test the strongest spirit?
I’m by no means social media savvy but will offer hashtag Scrapheap for us lot!