Phlebotomy

[Badger1]

Hi diagnosed with pv 2014 been on hu since with phlebotomy when needed been more or less fine with hu up and down doses then for about a year or more fatigue struck brain fog itching sweating disturbed sleep every night falling asleep during the day always need a veinisection every 3 months have asked if this is a sign of progression or hu not working now but just get we'll keep an I on things see how it goes but I'm thinking the worst am 65 now had to give up work and now my life seems it's for sleeping question is anyone else have this or having this is there an answer tia 👍

[Spanelmad]

If your not seeing a specialist mpn heam,I would ask for a second opinion

[Maisie10]

hello your systems are just the same as me. I was diagnosed in 2015 on Hydroxycarbamide and 3 monthly venesections. They have increased my hydroxy along the way. Now 16 tablets a week. Although now no venesection since January. I have been very tired, brain fog and no energy come the afternoon. I am 63. Unfortunately my consultant retired last year so had no face to face since just phone calls from my nurses. They keep their eye on my bloods which seem to vary. I also can no longer work, so tired.

Take care

[Threestreams in reply to Maisie10]

Hi Maisie .. I am wondering about the Vennesections you have .. I have them but I also have heamacromotosis (spelling??) I also have ET calr.. when I asked my haematologist she says the Vennesections are not for my ET and they are managed by the health path lab . I see a lot of people have phlebotomy or Vennesections … and not sure why ? Can you explain more ?? I am with you on the tiredness and brain fog … I struggle with both and need to pace myself .. not sure my family actually understand me at times .. look forward to hearing from you .. take care Trudy

[Maisie10]

hello Trudy

I have my venesections when my haemocrit goes above 0:45, which then brings it back down to acceptable levels. I think it’s a quick way of them reducing the thickness of your blood.

My white blood count is also high. My platelets were ok until recently and have rose so they are keeping an eye on them.

It can be very difficult at times with the tiredness , I understand how you feel.

Take care x

[Threestreams in reply to Maisie10]

Thank you for your reply 🙏

[hunter5582]

The answer to whether a change in symptoms is a sign of progression depends on your definition of progression. Do you mean solely progression toward MF or progression in the status of your PV. If it is the latter, then the answer is yes, this is a sign of progression. If it is the former, then the answer is maybe yes maybe no. You would likely need a BMB to answer the question, though a repeat of the JAK2 VAF would also shed light.

Regarding the efficacy of HU, this is something that can change over time. What worked once does not always work forever. Our response to medication can change over time. HU is also known for some of its long-term risks of adverse effects. What you are describing is consistent with a lack of efficacy in your current treatment plan. Whether this is due to change in response to HU, change in PV status, or both is not clear. This is something you would need to review with your MPN care team.

Hopefully, you already have a MPN Specialist on your care team. If not, now would be the time to consult with one. It sounds like you might benefit from a different treatment strategy. Given the symptom array, ruxolitinib would be one of the top considerations. This is a decision that can only be made in collaboration with a MPN-expert doctor.

Wishing you all the best moving forward.

[Badger1 in reply to hunter5582]

Thank you for your reply I wish I was clever enough to under stand these things I realise about the blood thickness thing and know what the blood letting does talking to doctors seem a blur haven't seen a specialist so maybe can ask had a bmb about a year or so ago no progesion but things go over my head !!! 👍 hope your well

[sbs_patient]

I was in the same position: diagnosed with PV (at age 71) in 2015, treated by a local hematologist, first with phlebotomy and then with HU, starting at 500 mg/day, then 1000 mg/day. This dose caused skin ulcers, so it was back to 500 mg/day, but also frequent phlebotomies. In 2022, I found a MPN specialist who put me on Jakafi, which has done well for me, and no phlebotomies since 2022. You should really find a MPN specialist.

[Badger1 in reply to sbs_patient]

Thanks not sure how to find one but will ask 👍

[sbs_patient]

hunter5582 has posted lists of MPN specialists to this group on several occasions.