Update from a PV Newbie

[JP2018]

I had my follow-up visit with my hematologist on 10/31 when he confirmed my diagnosis of PV. I had been getting 3 venesections per week since my first visit on 10/15, those lowered my Hct from 63.6 to 52.4 and my Hgb from 21.5 to 17.2. At that 10/31 appointment, I had another venesection and the doctor ordered future venesections 3x weekly until my Hgb was 15 or lower (his order was based on Hgb, not Hct). At my next visit on 11/2 my Hgb had already gone down to 14.9 (yay) so I did not need a venesection and they told me to come in only once a week. My next visit was on 11/7 at my Hgb had gone up to 15.1 so they did do a venesection. However, since that last one on 11/7, my Hgb has stayed below 15 and I have not needed a venesection (today is 11/29/18). I'm pretty happy about that! I do not take any other medications except low dose aspirin. However, I do take a liquid turmeric supplement each day and I'm wondering if that could have a positive effect (?). Any thoughts? I found a research paper on the web that indicated that turmeric (curcumin) may be beneficial. I'll remain cautiously optimistic I guess. Wishing you all good health and happiness during the holiday season and always!

[Iwillwin123]

Can you share what were your platelet counts through this time ?

[JP2018 in reply to Iwillwin123]

Lowest count was 149, highest was 195. Currently at 177.

[Kelly2 in reply to JP2018]

Hi, how can you have PV with so low platelets and without medication for that?

[JP2018 in reply to Kelly2]

Gosh, I'm not sure, I guess everyone is different. Do you think that's unusual? I was just reading from my lab reports. FYI, the numbers I gave are in K/uL, in case that makes any difference.

[Kelly2 in reply to JP2018]

Have you had a BMB?

[JP2018 in reply to Kelly2]

Yes, they did that on 10/22.

[Kelly2 in reply to JP2018]

They don't give you Hydro because you don't need to lower platelets. Yes we are all different.

[RobPV in reply to Kelly2]

PV is to do with over production of red blood cells. ET is to do with over production of platelets. You can have high or low/normal platelets with PV.

[Dennykev]

Turmeric , hey anything is worth a try I say.