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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 23 hours ago | Replies (397)Comment receiving replies
Hey Christine...I am 49, diagnosed with PV about a year and half ago. Have very similar symptoms. My platelets are also just over 700, my ferritin is 4, my iron is 39. My hemoglobin last check was 12.6 and hematocrit was 45. In the past, I've been able to go 9 months w/o a phlebotomy with just taking 162mg of aspirin a day. The difficult part of all of my symptoms is the fact that I am also perimenopausal. Joints hurt occasionally, brain fog, and the worst is the hot flashes and sleeping. Im really fidgety at night when trying to fall asleep. I was told by my hematologist that I could take iron suppliments 3 times a week and could take medication to help with hot flashes and such. I was also told by my good friend who is an oncology PA that the reason my platelets are high and Im so fidgety is because my iron is so low. She questions why I haven't had an iron transfusion. I just don't know what to do, as I have also read that you don't want to take any iron suppliments. My doctor said that we will be monitoring and adjusting for a long time and if numbers rise we'll just do a phlebotomy. I did watch a female doctor who has PV and went through menopause that hormone therapy is fine as long as it's topical and not ingested. Would love to hear others that are in the same boat.
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Wow! Finally a person on here who has PV and is going through menopause! Girl it has been a crazy ride! I was diagnosed two years ago this Jan. I am 58. I had a hysterectomy with ovaries left in, in my 30’s and began menopause late at 55. The aches and pains, hot flashes and crazy pins and needles, tingling have just made my PV worse. PV can cause all kinds of crazy stinging and burning, especially in your extremities so I haven’t a clue which is causing what? It doesn’t matter except if it’s menopause I can hope it will go away at some point. As far as any kind of hormone therapy, I was told a big NO from my oncologist. Even creams absorbed through the skin can increase clot risk and we are already at high risk for blood clots. Please ask your doctor about taking Clonidine .5 mg for the hot flashes. It has lessened mine by about 70% Its a very low dose BP med that’s been around forever. My BP has always been normal and it just lowered it slightly so I’m doing well with it. Taking it for about 10 months. One in morning and one at night. Also it’s very cheap if you don’t have prescription coverage.Theres a non hormonal one that just came out but can effect your organs so I wouldn’t want to take that one. Stay positive and try not to worry. I’ll check back to see how you’re doing. Good luck!