Posted , 19 users are following.
i have been living with this for 2yrs now and i must say with no help from my doctors, i know its rare and not many women suffer with it but are there any on here ? am getting a bit desperate now feeling really un well
thanks
5 likes, 101 replies
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Zapamania bikerflorist
Posted
Hi biker I have Pv for 4 yrs now and I'm a female. I would be very happy to discuss symptoms Drs or anything you'd like about Pv. Linda
harrishill1 bikerflorist
Posted
Hi biker, I've been diagnosed for four yrs, am a 75 yr old female. I was on Hydroxyurea, and doing fine. Now, My hematologist has me on two capsuls a day. I find that my legs are sore when I walk the dogs. Something new. I have started on a
?one a day vitamin because the meds do deplete the body of certain vitamins. Also, lately, I notice I can no longer eat cinnamon, and some other spices, or chew gum. I get mouth blisters if I do. I also learned that red wine does the same thing. I am hoping I can soon go back to taking only one capsule a day. I think I'd feel better on only one capsul.
harrishill
catherineJoH bikerflorist
Posted
I found out a year ago I have PV with the Jak5 Gene. I've been managing it with phlebotomy about every 3 months. For the past 2 months though I've have to do it every month which concerns me
clem19079 catherineJoH
Posted
harrishill1 clem19079
Posted
Hi clem. at first, we all have to have blood drawn called a phleb. However, the hematologist usually puts us on meds eventually. You are probably seeing the hematologist every two months or so. he will decide when to put you on meds. I've been on meds for almost 4 years now. I am doing okay. Best of luck,'harrishill
frances20411 bikerflorist
Posted
I am a senior lady who is in remission of 2 diferent cancers which occurred shortly before I it was found that I had PV. Like you I know my body better than doctors
but I will take advice when needed. My HCT number was in the high 50's and on my own I decided to do away with iron...I know this is probably not recommended but my HCT has dropped to normal. I was having 2 phlebotomies a month and now one if needed. I do not eat red meats or veg. high in iron and I do not take
iron meds. I also will NOT take the chemo med Hydrea...I won't put anything in my body with complications. I drink 1/2 gal. water, walk as much possible and
take a baby aspirin daily. That is it...I am a firm believe in prayer. Good luck!!
clem19079 frances20411
Posted
Iron isn't recommended with this discease. I am lethargic quite a lot of the but its something i will have to live with. Some of you feel plenty of water makes a difference to your condition, so do uou not think your water intake should be alkiline type which is definetly better for your as there are no chemicals in it.
veronica84833 bikerflorist
Posted
Hi there,
i understand I have been living with this for 2 years, however they tell me I probably have had it for ten and didn't know it.. Yes I have been very down about it lately myself not feel well low energy.. Please hang in there, some days are better than others.. But it can be hard to see that if you feel like crap most of the time..
veronica84833 bikerflorist
Posted
Hi there
i have had it two years myself, I'm a female.
My doctors tell me I've probably have had it for ten years ..
some days are better than others, hang in there.. It's hard because if you are anything like me you feel crapy most of the time. Sometimes the doctors are not helpful. You just have to be persistent ..