PV and/or ET - JAK2+ - currently asymptomatic

[Pat032018]

This is my first posting with the support group. I was diagnosed with PV in March 2018 where at that point my hematocrit was 62 and of course the hemoglobin was also elevated. However, all other data within the CBC were normal to near normal at the time of diagnosis.

After four (4) phlebotomies of the full plastic bag (not sure if those were ¾ of liter full each time), my hematocrit went down to a level that was acceptable at 46. However, the platelets have steadily rise to about 650 (fluctuating between 625 and 675 over 8 months) and white blood cell averaging around 13.5. Ferritin is now low between 10 and 12, and Iron is low also at 25.

I have been taking aspirin as recommended by the doctor, and I did research that ended with me taking garlic/allicin, turmeric, gingko biloba, and fish oil supplements. The only supplement I truly have read that would be effective in inhibiting platelet production is allicin - which is raw garlic exposed to air for at least 15 minutes, and I also take the supplement (Allimed/Allimax the good kind as I stopped taking those I bought from Walmart). Reading thru the internet, it mentioned that Allicin could not survive processing inside our body/organs, hence I bought Allimed which it claims to have a stable 450 mg of allicin and that stability should survive thru all of our organ processing). Since taking Allimed a month ago and eating 3 cloves of raw garlic (with a decent amount of parsley to neutralize bad breath/odor effect) each night my platelets have gone down from 675 to 650 – not bad but I was expecting more. By the way, I think allicin had also a very positive effect on my blood pressure – and it took my blood pressure from the borderline to within inside acceptable range.

Since my initial diagnosis was PV, the hematologist advised me to keep my iron as low as possible since having high iron will have a tendency to produce more unwanted red blood cell for a PV patient. So, I was able to accomplish the doctor’s advice regarding iron and RBC. His current concern is the platelets which is now increasing and had actually recommended low dose Hydroxyurea which I had declined – as I would like a “wait and see approach”. Except for itchiness that is manageable, I do not think there are any serious symptoms that I have to consider at the moment.

My question to the hematologist was, do I have PV or ET? He said that I have MPN which could be PV, ET, or myelofibrosis. He seemed to have changed his initial diagnosis from just PV to MPN (the entire group).

There are a lot materials in youtube.com from leading doctors in the field, and these are very informative. One doctor had mentioned that an MPN disease can evolve maybe from ET to PV, or to the advanced condition. I am thinking that I have PV and maybe ET- I am currently able to manage my RBC/hematocrit by lowering iron level; however, a lower iron level could cause increase production of platelets (and maybe induced ET). I am able to keep low iron by eating mostly fish and avoiding red meat. I still eat pork and chicken occasionally.

I am mostly asymptomatic at present, and I hope that I can defer taking Hydrea for a long time. Being an optimist, I would like to think that there could be some medical cure breakthrough for MPN patients. In youtube.com discussions, there are mentioning about combining HU and Ruxolitinib or Interferon (etc); and another that is being researched (not in humans yet) is methotrexate that is relatively inexpensive and is already being used for rheumatoid arthritis (as the latter medicine also targets JAK2 area). Hope someday, we all could benefit from this research. Most importantly, I keep my faith (Christian) and it helps me react positively to all that are happening with my health.

QUESTION:

Other than eating garlic or taking garlic supplement, what else are effective for decreasing platelets production in your own experience? Thank you.

[john0084]

Love reading your post you have gone to a lot of trouble to reduce your platelets naturally, unfortunately I can't answer your post as I said yes to the hydroxy. Mind you some of your symptoms certainly ring a bell with me. I was diagnosed with Pv this year but as of yesterday my platelets are around 600. I'm currently on 5 hydroxy tablets a week. Best of luck

[Paul123456]

Pat

Have you had a BMB and do you know your %JAK2 (Allele Burden)?

What are your latest WBC?

Best Paul

[RobPV]

Thank you for your very detailed post. I am also in the UK and was diagnosed with PV in May 2017 after being initially diagnosed with ET in March 2016. The first thought that always springs to my mind after reading any post asking for tips or advice is how old are you? Many people assume that all MPN patients are over 60 years of age as that seems to be the norm. I was initially diagnosed at 43 years old. At my last visit to see my haematologist which was Monday 19th of November, I was seen by a registrar instead of a consultant. My local hospital seems to rotate some staff within the county between several hospitals. This results in me being seen by someone different every time I have an appointment. At this appointment I got the distinct impression that I knew more about my condition than the supposed professional sitting opposite me. After asking if I had experienced any symptoms since my last appointment he simply made a strange face after each reply... for example I said that my temperature rises after eating and that I get short of breath frequently. He then just looked at me and said " I can't think why ". I had to ask him to show me my latest blood test results after he said there was nothing to note about them. He was obviously wrong to say that as my platelets are 816, WBC 11.0 RBC 6.47 HCT 0.45 and ferritin is less than 9. Because of my relatively low age (now 46) I have never been offered any medication other than aspirin 75mg per day and venesections 500ml every 2 to 3 months. So in reply to your question I can only say that either I am under the care if idiots (which I suspect is true) or your platelet count of 675 is nothing to worry too much about. I doubt if any diet changes will make any significant difference to your platelets which rise and fall constantly, and a change of only 25 is nothing at all.

[Tico in reply to RobPV]

Hi Rob,lol🤣🤣🤣tend to agree with your post! Ref:idiots... Atb, tina.🤗