PV & iron deficiency

Hello Sharon, I also found out in May 2015 I had a clot in my

portal vein going into the liver, then later been dignosed with PV,

I'm JAK2 positive and suffer from the nightsweat, spleen pain.

My Hematologist have done the blod letting every 5 weeks since (waiting for a total Hysterectomy to be done, thats now just done) she said after its

done she will treat me with, hydroxyurea ( low dose of chemo in

tablet form).

Have your hematologist mentioned other treatments?

Hope you get a treatment that will give you more energy.

Thanks for your reply. You've had quite a time of it.  I also have Jak2 gene. My platelets hover between 700 and 850. My haematologist said if it gets to 1000 he will put me on hydroxy too. I am having many hot flushes and cannot stand the heat anymore. My main concern though at the moment is the iron deficiency and lack of energy from venesections.

O boy, yes the heat is hard to deal with, I live in Australia and we are just at the end of summer, if it wasn't for air conditioning I

don't know if I could cope.

Yes the lounge is my friend at the moment while recovering from surgery. I'm in Redcliffe QLD, where are you from?

I live on the NSW south coast. 

I wonder if anyone knows whether you should keep eating meat when you have very low iron (due to venesection) or cut it from your diet and just function the best way you can.

Hi, I'm Magnolia, 33, and I'm new at this forum. I've been diagnozed 3 years ago with essential Thrombocytosis... I didn't have any complication sofar, but I found out only by doing a routine check up for my job Initially the platelets count were 500, not that much to worry but after one year they increased to 800. I didn't want to start Hydroxyurea so i waited for another year until they arrived to 1 mln and unfortunatelly I had to start it. It's two years now that i'm taking hydroxyurea but I'm kind of afraid of the complications this medicine may give me in the future.

In regard to the iron, I have low iron level myself but i take periodically Tartidyferon (10 days per each month).

The only main problem I'm having since one year is the irregular/lack of monthly menstruations. I don't have children but I would like to have one day. Is there any other medicine to be used for having less serious complications?

I have heard (but I'm not sure), that there is this new treatment that stops the increase of blood platelets. Have you ever heard of such treatment?

 

Hello Magnolia

i have thrombocytosis and polycythemia Vera. My treatment so far has only been venesections and aspirin. I am not on hydroxy yet but my dr said if the platelets keep rising he will put me on it. I know they are always working on finding new medications for these conditions but I don't know of any myself.

My iron deficiency has been caused by venesections but my dr said I cannot take iron supplements otherwise I will need more blood taken.

i have no idea what my diet should be.

Best wishes

Polyl vera/iron is a fine line.  I will not go on Hydroxy (don't like the numerous side effercts).I am in America and my doctor wanted me to take slow release iron

after each phlobotomy.  I did for a while...but this created a vicous circle...  So I stopped taking iron pills and I also stopped eating foods with high iron content such as red meat, kale and spinach.  I do have phlebotomies when my HCT is over 44 Normal is between 40 and 44.  My HCT has been in the 50;s.

My doctor is concerned mostly about DVT (blood clot in the leg).  I do hope that you have laboratory test a few times a month...to ck. for the HCT number.

With limiting my iron rich foods and drinking a lot of water (nothing else) and walking at least 20min. daily....I have kept my HCT to 44 and below limiting

any phlebotomies.  I got poly vera after 2 cancers that are now in remission.

I am a senior and a female.  Also instead of iron pills I take Vtiamin B12 which gives me energy but that almost is like iron so be careful.  Good luck!!