Clinical guidelines for prescription of hydroxycarbamide at age 60 for mpns?

[FlorenceBlue]

Hi, I've heard that it is clinical guidelines (NICE)? to be offered Hyrdoxycarbamide when we reach 60 for management of mpns- if this is the case does anyone have a link they can share that states this specifically please, thanks in advance

[RoundTheWorld]

For Polycythaemia Vera (see section titled: How is polycythaemia vera treated in secondary care?’) in the following link

cks.nice.org.uk/topics/poly...

[FlorenceBlue in reply to RoundTheWorld]

Thankyou, so there should also be one for ET too. Have looked but having trouble finding anything, thanks again for your link though.

[Phantasia]

That was the case in Australia until recently.Now ET patients here are only prescribed Hydroxyurea if there is a history of thrombosis and/or presence of JAK2 mutation. Simply being 60 on it's own isn't a clinical reason for HU.

My haematologist put me on HU after my 60th birthday but I had a terrible time with it. She took me off it as the guidelines had changed and as I didn't have either of the other two risk factors I have remained on 100mg daily aspirin alone. My platelets weren't decreasing anyway.

I don't know the situation in the UK though. Something to discuss with your haematologist.

Best wishes.

[Loubprv Volunteer]

Morning Well you've got me flummoxed there!

I m 70 and was on hydroxicarbamide for 16 years until last year

Now on Ruxolitinib.

Best wishes

Louise, Cumbria

[quanglewangle]

I am 82, JAK2 with ET.

I have put up with the many side effects of Hydroxycarbamide for 15 years but recently persuaded my Haematologist to switch me to Ruxolitinib as various antihistamines were not cutting it with the pruritis. In two weeks I have lost my peripheral neuropathy, erythomelalgia and pruritis and hope that my actinic keratosis and my cracking & flaking nails will begin to improve. Plus my fatigue has lessened greatly so I feel normal again (whatever that is).

Not everyone gets all of the possible side effects of HU and it did manage my platelets but all other FBC parameters were out of normal range but it will be very interesting to see the full effects - as already since changing my neutrophils have dropped a lot....

I know that did not really answer your question but maybe gives food for thought...

[Luvlyhubby]

My husband was diagnosed with PV & Jak2 Sept 2023. He was prescribed Hydroxyurea & after a few 'tweaks' he's now on 500mg daily (which he takes before going to bed). The only side effect he's had is his hair is more fine ( tho he is 74!). He has lots of energy,sleeps well,great appetite, no fatigue, obviously hoping that continues. Like any drug I've read it doesn't suit everyone,but, what does? Hooe you get sorted

[Pachena]

I am ET JAK2+, 62 female with 2 x TIA’s in 2019.

I was on Hydrea for 6 months, platelets slowly decreased and refused to take it in the end due to side effects. Had 6 months break with just aspirin and my platelets went up again.

I have been on Pegasus since June 2024 and my platelets came down faster than HU with minimal side effects. I am now low 200’s. I progressed from weekly injections to 10 days, 2 weeks and now on 3 weekly injections of 45mg and doing really well, along with the daily aspirin.

Best wishes to you 🤩

[Mieshie]

I have no reference to cite, only experience. At 71 I was surprised with ET diagnosis. No symptoms, no issues but had platelets just under 1M. Referral to hospital hematologist resulted in prescription for HU. I was naive about MPN and did not question. The side effects were horrendous. Had brain fog, mouth sores, nausea and more—textbook response. Liver enzymes jumped up. In conversation with hematologist found out she believes HU is the first response for ET no matter age and unfortunately it was not a good fit for me. I had joined this site and did some further investigation that totally changed my outlook. She asked me to try anagrelide which was good for two weeks then ended up with cardio issues. I knew this was possible and stopped taking it. I asked for peginterferon which was delayed while liver enzymes settled. From this site I knew about milk thistle and started it when peginterferon commenced. I was irritated that at my age taking HU may reduce platelets but does nothing to slow or prevent progression. The cost difference is irrelevant. It is working for me, nominal side effects and covered by insurance. While can’t predict what side effects may result from whatever drug, had I been more aware would have insisted starting with peginterferon.