Age Based Risk Increase with PV

[DougyW]

I was out on treatment I Jan due to my age (61) increasing my risk profile. I saw a different Haemotologist recently who says the age point is 65 for PV. Is there a definitive age for this. Apart from age I am otherwise fit & healthy with venosection ~ every 8 weeks.

[hunter5582]

Some MPN experts use age 60 while others use age 65 as a risk indictor. Some do not use age, rather looking more individually at each patient. My MPN specialist said "65 is the new 35." Using age as a risk indicator is based on the research that shows an increase in thrombosis for people with MPNs starting in the 60s; however, this increased risk applies to everyone with and without a MPN. The nuance is that we all age differently. Some age faster and have more cooccurring medical conditions than others. That is why some MPN experts take a more individualized approach.

Ultimately, it is up yo you to decide when it is time to initiate cytoreductive medications. It is your treatment goals, risk tolerance, and treatment preferences that should drive the decision. I tried phlebotomy-only for a while when I was age 65+. It worked for a while but the side effects of phlebotomy-induced iron deficiency were worse than the PV symptoms. This lead to my starting on the interferons (Pegasys then Besremi). My quality of life improved significantly using the interferons. I feel better now than I did 10 years ago. In additions, I have a nondriver mutation (NF1) that increases my risk of progression to AML. I set reducing risk of progression as a primary treatment goal. Reducing risk of progression and improving quality of life were the reasons I chose to start in the interferons. Age had nothing to do with my decision. I am very pleased with my treatment plan.

Wishing you all the best.

[Loubprv Volunteer]

morning. Gosh that seems a bit odd. I ve never heard of Mpns being age specific!

I ve had PV since I was 54 ( now 70) and was chatting to a lady of 83 in the clinic who has had PV for 25 years! She’s amazing, hikes, kayaks, cycles…….at 83 😊

Both on Pegasys. I d definitely ask for further treatment - seek a second opinion from an Mpn specialist. You can always jump ship and go to another haematologist. Best wishes Louise

[RoundTheWorld in reply to Loubprv]

Loved this post as it gives me plenty of hope for future adventures!

[Imkerin]

When I was initially diagnosed with PV in 2021 it was managed by the local hematology department initially with venesections and aspirin. Being over 60 years old they recommended I also start also medication. At the same time I was transferring my care to UCH. There the specialist MPN pathway is to start medication at age 65 if no other risk factors are present. There do seem to be differences between services.

[ainslie]

I think you posted a few months ago that you were already on Peg?

The 60 or 65 thing is to a degree box ticking and guidelines, our risk probably does increase as we age but if someone is slimmer,fitter,healthier at 65 than the were when they were say 55 or the average 55 year old then I’m not sure it makes sense.

I know several MPN people well over 60 , some near 70 not on meds. As always best get expert opinion.

The whole general drug or not to drug is a big subject and for another day

[DougyW in reply to ainslie]

I've been taken off due to the impact on my neutrophils [went down to 0.5]. The question is do I restart meds or not and if I do what to start on. I'd rather wait until 65 as I'm not over weight and am otherwise fit. I see my Haemotologist week on Friday so exploring my options.

[GardNerd]

This is such a great conversation to have with an MPN expert. I'm definitely not an expert and have been learning as I go with PV. I had phlebotomies only until I turned 60 (following diagnosis at age 44), and my hematologist always said I'd need to go on a medication at 60. His focus was on managing the risk of thrombotic events. I tolerated the phlebotomies well and always stayed fit, active, and healthy.

At age 60, I moved to a new city and saw an MPN specialist. Besremi had just been approved and Jakafi maybe a few years before that. The doctor did a bone marrow biopsy (first one since the one I had at diagnosis). Sure enough, during all those years I was feeling great on the phlebotomies, the disease was slowly progressing (as measured by allele burden and fibrosity). So our focus changed from simply managing the thrombotic risk to also seeing if we could manage disease progression. That led us to Besremi, which has been doing its job well.

All that to say, with new drugs, I think it's good to consider more than managing risks related to age (like the thrombotic stuff). Is there also a way to manage disease progression? If you're newly diagnosed and it's progressing very slowly, that might not be a huge priority. It sounds like Pegasys didn't work for you, but maybe Jakafi or Besremi?

Best of luck to you!!!