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Diagnosed polycythemia vera at 26: Any young PV patients out there?
Hi everyone,
I am in the process of being diagnosed with PV. I am 26 years old and I am going to be honest , I am terrified. I have insurance, but I am a teacher, I cant afford thousands of dollars in phlebotomys and blood work. However I also know if I dont do my treatments I I will not survive. I dont know how to tell my mom and husband I need to make a will and that I may not outlive them. I have always been terrified of needles, and have become a human pin cushion. I am scared and angry and confused and it feels like everything I read is for people 50+. I have researched and know everything about PV , but it isnt relieving any of the stress or anxiety of knowing i have to live with this for the rest of my life. I know i need to repriortize and put my health before anything , work and family included, but thats never who I have been, I always put everyone first. Any young PV patients out there to offer some advice?
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@lindakay55 It could take a month or two but your platelet count is totally acceptable at that number. Phlebotomies will lower the hematocrit and sometimes lower the red cell counts but the meds will take care of the platelets. If you hold steady there you’ll be fine. Also it’s normal for them to jump around within 100 pints or so from time to time even on the meds so don’t freak out if they go up here and there. I started with seven, went to five and then three a week and now am taking five again. Side effects were too much when I took it daily. Hang in there!
@nypara66 I thought the HU reduced the hemocrit and the aspirin reduced the platlet. Am I wrong ?
@lindakay55 The phlebotomies reduce the hematocrit. The HU can help lower the red cells if you take so much which may make the phlebotomies less often. The HU is mostly to reduce platelets and lessen phlebotomies. All the Aspirin is for is to thin our blood. High red cells can stick together. When are numbers are high we are at risk for blood clots. You will be ok. It can all be controlled if you stay on top of it with your meds and monthly labs.
@nypara66 thanks for your reply. My hematocrit is at 50.3 and I was hoping the HU would bring that down as my doc said he thought my numbers could come down with just Aspirin and HU. Trying to not live in so much fear.
@nypara66 what were those side effects when you took it daily?
@lindakay55 Most of us PV Peeps are staying at 45 for hematocrit. As soon as it creeps past you need the phlebotomy to lower it. One more and you should go under! Maybe the pills will work better for you b/c you’re so young and once it’s lowered, it’ll take a while to climb back up ☺️
@lindakay55 My side effects were extreme sensitivity to sunlight and tooth pain. Like someone punched me in the mouth and random tooth nerve pain but not sensitive to hot or cold. So weird!! But everyone is different and your body does adjust. My hair was coming out, thinning and then it stopped! So just do what you need and wait and see. Sorry for the long messages. I’m 59 and retired now so I have time lol
@nypara66 Thanks. I'm turning 70 on Monday so I'm not young.
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1 Reaction@nypara66 oh wow. good info to have.
Yeah, I'm retired too so appreciate you taking time to write me.
Please do not be scared. Improvements in care and medications are happening. Important to know that most medications require you to be more careful with the protection while outside in the sun. You need to tell your family because support is more important than fear. Do not forgot that 14-20 is a broad average and if you are and keep healthy your age is going to to destroy that average. I am over 50 with PV/JAK2 and it has not stopped me mentally or physically from acting like I am 26. Stay positive ,strong and happy
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