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Old 09-21-2012, 09:43 AM   #1
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polycythemia vera

I have recently been dianosed with Polycythemia vera. Just wondering if there is anybody else that has this and would like to share their experiences about symptoms and what treatment they are doing to manage it.

 
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Old 10-03-2012, 04:11 PM   #2
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Re: polycythemia vera

Hi!My name is Randy and I was diagnosed with PV in 2000.My first symptoms were red face,blood shot eyes,itching in the lower legs after hot shower,itching on arms and legs,anxiety,and extreme fatigue.My treatment started with phlebotomies and meds (hydroxurea & anagrilide).
I am now 64 yrs old and take one and one half mg of anagrilde,two 81 mg aspirin,3mg xanax and 50 mg zoloft.I also take benedryl for the itch and 1000 mg fish oil.I haven't had any blood taken (phlebotomy) for about three years.My slpeen enlarged in November 2010 and had 15 radiation treatments to shrink it down and it is enlarged again.
Hope my reply will help U in some way.Take care and God Bless.
Randy

 
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Old 10-22-2012, 06:40 PM   #3
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Cool Re: polycythemia vera

Quote:
Originally Posted by 24sissy24 View Post
I have recently been dianosed with Polycythemia vera. Just wondering if there is anybody else that has this and would like to share their experiences about symptoms and what treatment they are doing to manage it.
Hi there 24sissy24
My name Is Deb, I live in New zealand, Christchurch, yeah where we had huge earthquakes just over two years ago. I was diagnosed with Polycythemia vera just over year ago, it has been a frightening ride, of not really sure what is happening, due to the quakes we were experiencing but seen the haematologist on 9/5/12 they took 400 mls of blood of me, HB 169 Hct.49 that next week 16/5/12 they couldn't take anything of me as my veins wouldn't allow them to but my HB 155, Hct.44
the week 30/5/12 after that they managed to take of 420 mls HB 157 and HCT.44, not taking anything else, Blood pressure pills, Gabapentin for pain, Omeprazole for Reflux , water retention pill. As I have swollen ankles and feet, my doc has done new blood works due to the edema, as it could be anything from my heart, liver, or kidneys I wish you all the best I love to chat with how you are doing, Randy a nice man, their are quite a few with PV on here I found, and all are wonderful people. Regards Debnz

 
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Old 10-23-2012, 11:25 AM   #4
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Re: polycythemia vera

I'm Ron, age 74 now. Symptoms began as early as 1995, diagnosed in 2000 --- having it better than many others have reported. I'm on Hydrox and regular phlebotomies like most others and, aside from the scar tissue from the phlebs making them painful, I'm doing OK. The spleen is still OK and blood counts not associated with Polycy are still pretty well normal.

I think the most annoying symptom is the night sweats -- my sleep is limited to 7 or 8 hours, and sometimes less, or none. \ Nothing seems to help on that score. Sleeping pills, even the prescribed versions, are only a temporary respite, if that. (I read a lot some nights and I'm retired so I can live with being a bit bleary some days.)

The daytime patchy itching is annoying sometimes but, in the way of things, tolerable. For me the typical tingling, *****ly itch after a shower passes in a half-hour or so. It's just a minor inconvenience.

Occasional very intense itching attacks is another matter. Oddly, I've learned that a long, really hot shower gets them under control. I spray the water on the areas that itch the most and stick with it till they subside -- sometimes it takes more than a half-hour of spraying. I come out with a drenching sweat and the usual tingling itching for a while but within an hour I am back to normal.

 
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Old 10-23-2012, 05:04 PM   #5
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Re: polycythemia vera

Hello Ron,
Nice to meet another PV patience, Yes I totally agree that the Itching is so annoying, and drives ya up the wall, My Gp has put me on Promethazine HCL it work like a treat, I sleep really well, I can sleep up to 10 hours, Mind you I have other underlying condition, which they are still trying to figure out, The last couple of weeks, GP put me on Furosemide, as I seem to have swelling on my legs and ankles, and feet, they not sure if its a Liver,Kidneys, Or heart. Off to have a Xray on my chest, he done a blood test a couple of days ago so I hang out to hear the results of them, Like they say no news is good news. anyway must dash, take care Ron.

 
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Old 10-26-2012, 08:59 AM   #6
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Smile Re: polycythemia vera

Over the years the doc who treats my polycythemia, an oncologist, has prescribed several anti-itch potions, all to no avail. Itching has come and gone with varying intensity regardless of what drugs I take or what food I eat. The latest try was Cyproheptadine which I recently stopped using after a year or so, doubting that it was doing any good. Stopping had no repercussions. Doc now reports that his drug cabinet is empty so I'm on my own.

He did increase my Hydroxurea (500 mg) recently to ten a week from one a day when my hematocrit rose more quickly than expected. No adverse reactions to date on that. He also extended my prescription of Zolpidem (Ambien) with the usual warning that the stuff can be habit-forming. Hopefully, it will get me into the habit of not waking in the wee hours of the night soaked in sweat and wide-eyed awake.

Speaking of the oncologist doc. He's on staff at the local university Cancer Center so that's where I get my phlebotomies every two months or so. Going there to endure an hour or less hooked up to a somewhat painful needle is put into a new perspective as I look around the "Infusion Room." As I'm sitting there reading a book to pass the time, others around me are suffering serious cancer therapy.


Ron

 
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Old 04-16-2013, 05:14 PM   #7
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Re: polycythemia vera

My boyfriend is in the process of being definitively diagnosed with polycythemia vera. We see the oncologist next week. It has been a shock and it was quite upsetting, but he has few obvious symptoms, gout, red eyes. Hopefully they will get it under control with phlebotomy and 81 mg aspirin.

Reading your postings has been very helpful and gives us hope.

Hugs to all!

 
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Old 04-22-2013, 07:39 AM   #8
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Re: polycythemia vera

Polycythemia is a spectrum of diseases producing a wide variety of symptoms and requiring individualized treatment. You need to consult a hematologist or oncologist who is familiar with this rare condition.

 
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Old 06-11-2013, 07:49 PM   #9
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Re: polycythemia vera

Hi

Anybody know the cost after insurance for the Nuc. Red cell mass test? I have a high HCT, and I have it scheduled, but I'm concerned about the cost.
Thanks

 
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