Free prescriptions ~ expensive. Do I need proof of PV link?

[Kari1961]

Hi all, I'm hoping someone can help me.

I was only recently officially diagnosed with PRV (Jaq+) in February 2015. But, have suffered ill health and symptoms of PV since 2009 after an initial diagnosis of Swine Flu in 2009.

Prior to 2009 I was in excellent health. Shortly after swineflu I was diagnosed with High BP and now take Ramipral. Shortly followed by a diagnosis of SVT (supraventricular tachicardia) for which I take Verapamil. I also take aspirin 75 mg, due to a stroke in 2012 and lansoprazol because of acid reflux.

Although I've only been confirmed as having PRV (Jaq +) since 2015 my Dr says that he is 99% positive that PRV was the cause of the stroke in 2012.... due to blood tests taken around this time and high hct levels.

I currently pay for my UK prescriptions and buy a pre-paid certificate annually ~ £120 a year. From what I've read I may be eligible for free meds associated with PV ~ if that's the case then it would just be Aspirin. So, do I need a confirmed diagnosis to be eligible for all my meds: Ramipral, Verapamil, lansoprazol and Aspirin?

Would be grateful of any information or advice before I speak to my GP.

[Paul42]

Hi,

Yes you are entitled to free prescriptions with your diagnosis aslong as you take medication as a result, which you do. You will then get all your prescriptions free.

you need to ask for the form from your Gp surgery, you tick the cancer box. My GP wouldnt sign it as he refused to accept the WHO classification that MPN's are a blood cancer so i got my consultant to sign it.

Best wishes

Paul

[Hidden]

Hi, Just to echo Paul 42's post. I have ET, jak 2 positive, diagnosed 2012 after portal vein thrombosis. I have other conditions and take meds for both ET and others. Like you when first diagnosed I was not aware I was entitled to free prescriptions, and bought an annual pre paid prescription too, to save money. Finding MPD Voice confirmed for me that I was entitled to free prescriptions. I as Paul says got form to apply from my GP surgery. I completed and when I saw my doctor got him to sign it. I did go armed with the information that World Health organisation classified MPD's as a cancer and although looked it up to check whilst I was there he did sign it.

I was ready for him to refuse to and all armed to ask my consultant!!

I take Hydroxy now, Aspirin, Lanzoprozole, Spirolactone, Prucalopride,Levothyroxine. plus Vitamin D (god I sound like a wreck!) so it would be very expensive without it.

Hope you get on Ok with getting it it signed and sorted. Liz C

[Kari1961]

Thank you Paul & Liz. I'll be printing out the info and taking it along to my Dr's appointment this week.

[lizzieET]

Hiya I agree with all the above. .. oh & my consultant also puts my aspirin on my prescription so I don't even pay for those!!! Good luck!

[Hidden]

Hi Kari 1961 I had this issue and I am JAK2 Positive ET - my hematologist didn't think that I would get exemption but I printed the page from the MPD voice website about and my doctor helped me to fill out the forma as I was not sure which boxes to tick and I have just rec'd my card and it covers all medications I have to take - I would speak to your GP as they will have the forms.

If you go no the MPD Voice site and in the search box type "Prescriptions it should bring you to the correct page to read.

Caz

[wormwood]

Hi all I have ET jak positive, I was lucky, my doc signed mine immediately and my card arrived promptly... I also have bechets and it can all get a bit expensive! Hope it gets sorted out soon for you.

[lizzziep]

Before I was 60 my haematologist signed my hospital prescription so that I didn't have to pay as ET is a cancer and if you have that you don't pay for your prescriptions (so he informed me). However now I am over 60 and fortunately don't have to pay for any medications (one of the few "joys" of getting older!)

Hope you can get the forms sorted and save a bit of money.

[Borage]

You should get a refund on the remaining months of your prepaid prescription card.

[Kari1961 in reply to Borage]

Thanks for that info Borage ~ I had no idea! You learn something new everyday. Extra pleasing when the knowledge saves you money. Thank you

[Mazcd Partner MPNVoice]

Hi Kari1961 the form you need to ask for is a FP92A you can read all the details on our website mpdvoice.org.uk/living-with.... Best wishes, Maz.

[Kari1961 in reply to Mazcd]

Thanks Maz. I'll take a look now.