Reply To: Never given a chance.

Home Forums Speakeasy Never given a chance. Reply To: Never given a chance.


watsoncraig
1 month ago

@alex_bolland yep as @stumbler mentions I have PPMS and overcame the hurdle. I mentioned it to my Neuro at Forth Valley Royal before the SMC ( our equivalent of NICE ) approved Ocrevus and he told me about an IPTR ( Individual Patient Treatment Request ) that can be completed if you meet the criteria of being less than 5 years diagnosed, under 57 ( why I don’t know ) and have active lesions ( detected by MRI ) .

Well my diagnosis was 4.5 years previous, was 48 at the time, as I was not sent for an MRI since diagnosis he sent me for one and they found new and active lesions, so the form was filled in and off it went to the board of the local health authority for approval due to the cost and lo and behold it was approved.

The power all lies with you’re Neuro to decide if you meet the criteria or not before the NHS will pay for it.

I have now had both half doses and one full dose and have not seen the wonder improvement some folk say it has given them but that is not both it’s purpose nor my desire (I would like to slow or halt the progression if I cannot repair the damage) .

Speak to your Neuro and highlight the process, pray they are not old school ( “oh you have PPMS so there is nothing we can do” as my old Neuro said before he retired) and see where it goes.