I was diagnosed in May last year with spms. I was told there was no treatment then, but very soon Siponimod would be approved.
I have patiently been waiting and it was approved back in Oct/Nov.
Different procedures/funding have all been taking place and a couple of weeks ago I had a call from my nurse to say its all systems go.
I needed to have some blood tests and if they were all ok, a specialist nurse would come and take blood for geno typeing to work out what strength tablets i need.
I was all excited and had another call from my nurse expecting her to say we are good to go - but unfortunately there is a delay and i have to be patient again!! Its something to do with a contract. I know with anything new there will be teething problems but its just frustrating.
The good news is that my bloods were all good
I was told recently that it will be a few months before this drug is available.
Not sure if this was specifically here in Wales as our meds are free?
I was originally told i would be starting in March but I can see that slipping away. My next appointment with the nurse is at the end of April so maybe thats when i will get the go ahead?
Its just so frustrating, I keep being told dates and then they go past and I get a new date and before i know it a year will have gone past with symptoms getting worse and no help to try to stop them - currently not on anything - dont get me wrong, im ok and certainly not like alot of people on here, I just dont want to get worse (dont we all!!)
On the plus side - at least i dont have any side effects from drugs
im ok and certainly not like alot of people on here, I just dont want to get worse (dont we all!!)
this comment mase me smile! why?! i think i may be one of the ‘alot’ that yuo mention. i do recall the earlt days which are niw nearly17 yaers ago. i cant begin to imagime being diagnised in recent yaers.
i am heartbrokem at the state of the nhs-i was a stafff nurse for over 12 yaers and have friends stikk working there who are at breakingf point.
BUTfor your owm sanity keep pushinf for the care/meds and support that yyuo need. i have to believe its stilll there just harder to source.
i hope that this situarion gets dealt with soon and to youyr satisfaction.
Thankyou for your post. I was just moaning . I know the NHS are under tremendous pressure especially this year. I will wait patiently - it cant be that much longer
Back on track!
Ive had a call from my MS nurse to say the contract is going though and she has refered me to a team who will arrange for bloods and an ECG to be done to work out if and how much of Siponimod i can tolerate. This is booked in for 6th April, then 2 weeks for results, so i should hopefully be starting the tablets mid/late April
Well done ACT1
ain’t it great when the NHS come through for us despite the rough ride they are having themselves?