MPN Voice
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Phlebotomy or Hydroxyurea

I have PV Jak2 positive. My blood counts have been very stable since 2012 so I have not been on any medications or other treatments. In July my counts elevated some. Hematologist had me return in three months to be checked again. They went up a bit more. Had blood work again yesterday. Platelets are back to normal (423 now 355). However, RBC 5.33, HGB 15.6, HCT 46.8, Red Cell Distribution 15.2. Dr is recommending Pheldotomy. I am a 70 old female. Anyone out there with these type counts doing phlebotomy? Has it been effective? What side effects have you had?

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Hi

Why phlebotomy with only 46.8 HCT and normal platelets? Is it the normal procedure?

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I am not sure why. What are typical levels where you start phlebotomy???

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I think consultants always try and get hct below 45. I have found venesections okay and I am sure you will be okay too you may only need one or two to get levels down. Keep well.

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I have 51.9 and probably will start having venesections soon. Also 650 platelets. I don’t want to start Hydroxyurea! Very very scared

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Hi there, My counts have been a bit higher than yours, my RBC still is. Where I am, they aim to keep the HCT below 45 and that's the number they pay closest attention to. I get a phlebotomy if my HCT is higher than 45. Never had any ill effects from it at all. The rate at which my HCT rises is slowing down now. Haven't had a phlebotomy for 12 weeks, which is the longest interval I've had. Was only diagnosed in June this year though. Stay well.

Liz

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Thank you. It is scary. I am very afraid to go on meds.

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Yes, 45 is the magic number for HCT levels. Venesections have been no big deal for me (OK, not exactly what I’d choose for an extra curricular activity!). Felt tired after the first couple but seem to be having less post treatment impact now. There can be some issues with iron deficiency and raised platelets. It’s a delicate balancing act and goes with the territory. The procedure itself is pretty straightforward. It does involve a special needle, it can sometimes be uncomfortable. Essentially it’s like giving blood - except they chuck it away! Phlebotomy is seen as a first line treatment and I wouldn’t think twice. I’d certainly take it over starting drug treatments. Good luck.

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Hi Sklines,

I was diagnosed PVJak2 positive 18months ago. I started with phlebotomy and asprin, but it wasn't enough, so went onto Hydroxy. After some tweaking of dose, I'm now on 4500mg /wk and have had few side effects -only from the asprin, for which I take omeprosol. I'm 66yr female. My counts are currently platelets 380; RBC 3.9;HGB 12.4 and HCT 40.5 (I dont know about Red Cell Distribution -not sure what this is). I haven't had another phlebotomy (yet) since starting hydroxy.

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Looks like your counts are great. The meds must be very effective on controlling them.

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Yes, the hydroxy has hit the spot so far -but still probably preferable to avoid until necessary -my hct was 53 and platelets 1324 when diagnosed.

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Yes, according to medical research I’ve read, 45 seems the magic number for hct. My hema. says I have ET & PV. My former hema. totally ignored my high rbc, hct, and hgb... just watching my platelets. In July, I moved and my new Dr. started me on phlebotomies on my first visit (my hct. was 54.). A week later, ALL my main numbers were higher! Especially my platelets, jumped 70,000. After a month, and 2 more phlebotomies, my rbc & hgb are normal for the first time in a few years. And my hct is almost there at 46.5. But I’m kind of freaking out bc my platelets jumped another 100,000 with each phleb. They were rolling around the 600’s, but last week were 961. I think they will start talking to me about getting on HU. I have an appt. for another opinion next month. I was hoping the phleb. could keep me off of it for a few years.

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