'Watch and wait'

[PT99]

Hi all

I was diagnosed with PV, Jak2+ in 2014. Since then I've just been on aspirin and venesections when needed. Other than that, I'm checked every three months by the haematologist. So, it's basically a policy of 'watch and wait'.

Just recently I've been reading a few articles from doctors advising that patients should start medication as soon as diagnosed - in particular, Interferon, to lower the blood counts and slow down any progression.

If this is the case, then why adopt the wait and see policy? Is it the cost of the drugs? Surely, it's better to take positive steps early on to control things?

I'm going to discuss this at my next clinic appointment but I'd be interested to hear if anyone else had read up on this and are a tad confused like me🤔.

Thanks

Pete

[Mazcd Partner MPNVoice]

Hi Pete, it is all very individualized to you as to when you should start medication and what medication to take, your haematologist will take into account many factors when deciding on your treatment plan, including your past and current medical history, any risk factors, like blood pressure, risk of clots etc, and then your blood counts and any symptoms that you are experiencing from the PV, there is no 'one size fits all' with regards to MPNs and when and how they are treated, it isn't anything to do with cost. It's a good idea to have a chat with your haematologist about it and ask him/her to explain in more detail why they have decided on the 'watch and wait' plan for you, you may find in the future that if your blood counts change, or any other factors change, that they will then start you on medication. Best wishes, Maz

[Hidden]

Hi i had been on watch and wait for 3 years just started last week i am in high risk.category due to age and other health issues but my counts are not as high like some people ,and like Maz posted everyone is different depending to on age and symptoms etc ,good luck all the best Holly

[PT99 in reply to Hidden]

Thanks for your replies Maz & Holly

I appreciate that everyone's situation is different and treatment seems to be tailored individually, and that makes sense.

The school of thought I've been reading about is one of why bother waiting for the condition to progress/deteriorate, if there are drugs that will slow things down from the outset when the body is more responsive to the medication? A link to one of the articles is below.

mpnresearchfoundation.org/i...

Thanks again

Pete

[jane13]

I think u make a good point. I have MF and wonder if i had gone on Jakafi earlier would the progression from PV have slowed? My guess is that is would, but the NHS didn't allow consultants to prescribe Jakafi for PV: too expensive and not enough evidence of benefit.

I don't know much about interferon nor if there is any evidence that it slows down progression. I think there is some evidence that hydroxy does slow progression to MF and this is the usual treatment, is cheap and has been used for years without too much in the way of negative side effects. And "only" 20% of PVs progress to MF. It will be hard work to get Jakafi authorised for the NHS to use in PV!

All very well but not great when u suspect you have lost a significant element of a short life expectancy. The NHS can't afford everything and finds it politically difficult to allow individuals to "top up" their own care.

Good luck

[Litefootes]

I've got PV and only on 81mg aspirin daily, and phlebotomies for 12 years now. At this point, since the PV didn't progress quickly in the wrong direction, I'm glad I wasn't given the drugs. So if/when I need them, it will be with a fresh start. I'm wondering if my diabetes, high BP etc played a part in not starting w medications?

At any rate, I hope things are going well for you.

Carol