vegetarian with pv

[tuffetgal]

hi everyone,

six months ago i was diagnosed with et by local hematologist. his diagnosis and treatment seemed extreme so i got a second opinion. i was then diagnosed with pv, and my symptoms seemed more accurate with that. but after reading some blogs

i am concerned that the hematologist flatly refuses to administer a phlebotomy

even though my platelet count is high. my hematacrit is between 45 and 47.

i was getting daily headaches, but those have stopped since i started taking

l-arginine. however i have a very low ferritin ( iron) level and have fatigue daily.

i think i should be taking iron supplements and perhaps getting phlebotomies

any advice from other pv'ers? i am generally in good health other than pv

thanks to my diet. thanks and keep on keepin on :+)

[linbatten]

I was diagnosed with PV in 2001. At that time my hematocrit was 67. We did numerous phlebotomies until it was down to 45. Since then if it was more than 45 we did a phlebotomy . We have kept my iron levels low, almost anemic, as iron causes the blood to make more red blood cells. I stay away from iron rich foods etc. After 16 years I have progressed to Myleo Fibrosis and will be going into COH tomorrow for a stem cell transplant. If you have a that itching sensation I found that after showering i go to a hot tub that is 103 or more and sit there until the itching is gone. Usually about 10 minutes. Then I stand in front of a fan to coo off quickly. Sounds weird but it works for me. Everyone is different. But these things worked for me. If I travelled and no hot tub I get out and walk and it goes away. Not as quickly.

[tuffetgal in reply to linbatten]

hi lin, best of luck with transplant. let me know if you want to share that experience. thankfully i dont get itchy, but then i only shower once a week ( yes, i confess) and that seems to help.

[zfatherhen]

I don't have PV, but I had been an ET patient for 22 years. You don't get a phlebotomy to reduce your platelet count. There are medicines they give like hydroxyurea, anagrelide, or interferon. Even those they don't start until your platelets exceed 1 million unless you have other symptoms that may make you high risk of clots. Usually you just start with baby aspirin. My blood lab tests say a hemotocrit of 40-52 is normal for a man. Online, it looks like 35-45 for women. So, if you are a woman, then it is slightly high, but probably not high enough for the doctor to do anything other than monitor it.

[tuffetgal in reply to zfatherhen]

thanks so much zfatherhen, but a few questions.

does your platelet count fluctuate? can you suggest any foods to avoid ?

do you take vit b 12 or ferrous sulfate? my ferritin is very low and being

a veggie and 70 + i worry that i should be taking b 12 but research says 'no"

thanks for any input

[zfatherhen in reply to tuffetgal]

pvnow3, I'm 72 and a little over a year ago a bone marrow biopsy confirmed that my ET had crossed over to myelofibrosis. My platelets don't fluctuate, but have slowly climbed requiring a larger dose of Hydroxeurea. Unfortunately, the Hydroxeurea reduces not only the number of platelets, but it also reduces the red cells making me moderately anemic. I now take Jakafi instead of Hydroxeurea. The good news is that Jakafi instantly got rid of my joint aches and pains, making me feel young again, and the platelets are in the mid 300's. The bad news is that it wiped out my red cells. My hemoglobin went from a low 10.5 down to 7.0 (normal 13.5-17.7). With weekly Procrit shots and a reduced Jakafi dose, I was back up to 10.1. Now with shots every 2 weeks I am at 9.8. I'm not a vegetarian, but do eat a lot less meat than I used to. I'm not one to feel that diet change will help this disease. I do not take vitamin B12 and the doctor does not believe adding more iron to my system will help. I feel fine around the house, but do have to "plan" my day when doing anything physical.

[Kiturah]

Hi there, welcome to the club. I (like all of us) could have my facts wrong, but:

I think ET is a less extreme diagnosis than PV. Theoretically, very very rarely ET goes on to PV but never the other way. In point of fact I have met two people that say they have been given both diagnoses, I think one in each direction. I started with PV but now mostly have trouble keeping my platelets normal, instead of a million. Sounds like ET to me...

My understanding is phlebotomy does not reduce platelets at all, they immediately rise. Possibly plasmapheresis would reduce platelets. I have never heard of it being used. As other said, I believe hydroxyurea or anagrelide are commonly used.

You didn't mention your gender, but it might be relevant. I believe current best studies say keep the hematocrit believe 42, but some use 45. I had terrible headaches when my hematocrit was 60 but none when it was in the 40s.

L-arginine lowers blood pressure, what was yours without it, and is it okay now?

PV is inherently an iron deficient state. If you have it you churn out more red cells.

I don't take iron supplements and don't want to though I know I am quite iron deficient. I have started eating red meat once or twice a week. Iron supplements are usually hard on the gut. I thought they were available otc. Cooking in iron wear, iron teapots is easier but less iron is absorbed.

I am indeed too tired. Oh well, I have a life, I just plan carefully where to use my energy.

Relevant bits to add your story might be JAK 2 status and whether you have ever had a bone marrow biopsy.

Good luck Linbatten

[tuffetgal in reply to Kiturah]

hi lin

thanks for feedback, it helps my state of mine :+) i was having headaches daily,

and even in the middle of the night just from pressure on my scalp. but i take l-arginine and l-citralline together and they stopped almost completely. this combination relaxes the blood vessels and also cleans ammonia out of the liver.

i donated blood once and my platelet count shot up, so i dont know if that will

work for me, although a whole pint is a lot of blood. i cant take anagrelide, gave me a ten hour migraine, hydroxyurea seems too toxic in a 500 mg dose,

looking for another hematologist, but my new do dr. seems very open to my condition and open to my opinion. so, will get back to you after my next appt this coming tuesday, feb 1. good luck to you and keep me posted .

[tuffetgal in reply to Kiturah]

hi kiturah an update for you. my blood pressure has never been a problem, it has been low most of my life, now 130/90. i take gaia plant based iron for my very low ferritin level an 8! and my rbc just slightly high. i take l-arginine to make my blood vessels more flexible for platelets and so far i am getting a lower count. platelets seems to be my main problem, not wbc,rbc or hgb. been doing a lot of research and appreciate all feedback pro or con. thanks

[Kiturah]

Mine was low most of my life, shot up like crazy when my blood numbers shot up. My ferritin is 7, so right there with you. Yesterday bp was 120/94 (not on meds any more but was for a while).

Hope you are feeling like you can cope well with the challenges.

[tuffetgal in reply to Kiturah]

thanks kiturah for feed back. am going to see my regular do dr on monday. waiting to see whaat current labs are. .i have hydrea med but dont want to take it because of severe reactions after only three days. being hypersensitive to most drugs makes finding a healthy alternative even more critical. will keep you posted. please feel free to five feed back. makes me know i am not alone or a hypochondriac. :+))

[Kiturah]

good luck then.

I believed something was hypersensitivity that was not, just more symptoms of PV. Until I asked my doc if that symptom was the PV, not hypersensitivity, I was not told so. But when I asked and was told so, I went back to the meds and improved. (somewhat, not perfect)