First month of the rest of my life done!

[Jacki_Clayton]

And my platlet count has dropped to 296 from over 840. Has anyone else ever had such dramatic results?

I take 81mg aspirin and 1 mg folic acid once a day, and 500 mg Hydroxyurea twice a day.

[Mica11]

Hi Jacki, I am so happy for you! That sounds like a terrific result to me.

I am no expert, only having been diagnosed a month ago myself and just found out yesterday I have to double my dose of HU because I have had no reduction in my count at all.

[Jacki_Clayton in reply to Mica11]

My other counts stayed the same. But hopefully Monday's Therapeutic Phlebotomy Treatment will help those.

[lucieboo]

Much the same for me. 2x500mg daily for some years now and no need for phlebotomy for the last two years, haematocrit stabilised at a good low level, around 41-43%, am very happy. I get occasional mouth ulcers but quite manageable. My big fight is to keep my fitness level up, so easy to backslide if the weather is bad or I feel tired. but I take classes which keeps up my motivation (Pilates, Zumba and now Melt, which is a new curative programme). Also we have dogs so walking every day is obligatory. Not bad for a 75-year-old- Good luck to you, keep well.

[Wyebird]

Brilliant news Jacki. Why the folic acid?

[Jacki_Clayton in reply to Wyebird]

From my reading it's helpful for lots of reasons. But "keeping side effects away" seems to be the winner.

m.webmd.com/vitamins/ai/ing...

[Wyebird in reply to Jacki_Clayton]

Oh I see. I thought it was something your Dr had put you on. Ive just started taking tumeric and black pepper and also b12. tablets. I’m also taking chia seeds in the morning with my cereal. My b12 is mid range but I’m always borderline for or am anemic. Seems I have all the components but my Hb never rises above11.6 . Hence constant fatigue. Too early to notice any difference but will keep you all informed.

[shiftzz]

Well done... In answer to your question, I have dropped from 1143 to 169

[Wyebird in reply to shiftzz]

Goodness 1143 to 169 is brilliant. You must have been really poorly. When mine were only in the 560s I was rough. The hugest mine went to was 822. That was bad enough.

[shiftzz in reply to Wyebird]

Yep, really bad, my HCT was 0.614

[Lourdes301]

Hi Jacki, my platelets dropped from 976 to about 250 ( I was taking one 81 mg aspirin and 500 mg Hydrea or HU) within 2 weeks. They then started climbing up to the 500’s and my hem increased HU to 500 mg alternating with 1000mg. the next day. Platelets immediately dropped to 150 but I became very fatigued and lacking in energy ( very unusual for me ) and my toenails started to become discolored and one cracked. My hem poohpoohed my symproms but reduced my dose on HU back to 500 mg daily at my insistence. I went to my podiatrist ( I had seen him in the past for a broken foot) who immediately recognized the toenail anomaly as secondary to HU and recommended taking Biotin.

All this happened over a period of 4-6 months. I continue to take an 81 mg aspirin and 500 mg HU everyday. My platelets are climbing again and are at 596 . I believe my hem is going to want to raise the dose once they reach 600.

I like my hem and I feel he is a very good Dr at a major teaching hospital here but I’m going to get a second opinion with an MPN expert . Although HU immediately stopped the itching ( which was so very distressing) it may come at a cost (possible skin cancer - possible increase in risk of leukemia) and I need to know more so I can weigh the risks . I hope this is helpful. Best wishes to you.

Lu from Brooklyn, NYC

[Wyebird in reply to Lourdes301]

Hi Brooklyn. My Haemotologist specialises in MPNs. She’s assured me progression to leukaemia is random and is not related to your dose of hydroxicarbomide.

Hope this helps

[Lourdes301]

Thank you, Wyebird- that is helpful. You’re lucky to have a hem who’s willing to answer your questions. My hem is a generalist - Not an MPN specialist. I need to find a specialist. Be well and have a great day. Lu from Brooklyn