Would be grateful if anyone could share their experiences re being diagnosed with Ploycythemia Vera (PV) and experiences taking hydroxyurea / hydrea.
I am finding that, clinically, there is consensus from rheumatologists, neurologist and haemotologist that I most likely have it, but if the blood and bone marrow tests don;t show it, they are loathe to act. That feels like no man's land...
It sounds like you and I are in a very similar boat. I was diagnosed with PV about 11 years ago but the jak12 genetic test and the bone marrow test both say i do NOT have it. My CBC's on the other hand say that I do with elevated RBC, Hemoglobin and Hematocrit. They have been performing phlebotomies for the last 11 years, ranging from every 3 days to every 2 months. I was diagnosed with EM a couple years ago as well.
My spleen is on the large side but not quite "enlarged" by Kaiser standards. Platelets are normal. I even did a nuclear blood test (took 4 hours, uhg) and it said no to PV and that i was just dehydrated (not, they tested for that repeatedly).
How old are you and have you done phlebotomies at all? Hydroxyurea can cause Leukemia if its used for decades.
I was diagnosed with PV after being misdiagnosed for 18 years. The flushing showed up 1st and then all the blood tests. After 18 yrs I was tested jak 2 positive. I was put on hydrea but I didn't tolerate it well. It didn't help me symptomatically
That is interesting.. i'm confused how they could think PV if your blood levels are normal? You should at a minimum have elevated hemoglobin and red blood cell count and/or hermatecrit with possible platelet above normal as well. Did they determine a low level of plasma volume? that would be the only thing else that would make sense to even be looking at PC without other increases in blood work. But, hey i'm no doctor =].
Have they done an ultrasound to measure your spleen? that is also one of the big factors that show up with PV. Jak2 and Jak12 mutations are also found in a high % of people with PC. I've done a TON of research on PV over the last 10 years or so and honestly have never run across someone who had it but didn't have elevated RBC, Are they checking your erythropoietin levels?
As for the EM, i feel your pain.. unfortunately the last several years have been pretty much as you've described, pain pain and more pain.. mine is foot to knee, hand to elbow, shoulder thru face essentially. my manhood is about the only thing that DOESN'T hurt lol.. I use "cooling towels" (http://www.amazon.com/Chill-Its-6602-Cooling-Towel-Blue/dp/B001B5I57I) and LOTS of fans, i have to at least one fan on me 24/7, that helps a fair amount with preventing a full on hot lava man impersonation but if I get active at all, forget it.. burning man here i come..
One last opinion, i'm also confused on the DR stating that PV is typically detected years after EM. I would argue that from what i've seen, experienced and heard from others that it would be exactly opposite that if anything. EM is really tough to get diagnosed and PV is relatively easy to get a diagnosis for. RELATIVELY!
I really appreciate you responding.
I am 49. Diagnosed with chronic venous insufficiency (CVI) November 2012 - in deep and superficial veins throughout top and bottom of both legs. Diagnosed with EM in August this year. Was in my feet and chronic (every deay) and acute (sever pain all the time when I stand, an by end of day even when sitting with legs elevated. EM happened just bang - suddenly in January my feet would go red and burn all teh time - took 7 months for proper diagnosis (short by many "standards").
In last month, things progressed aggressively and badly - suddenly hit my genitals, going up legs, in hands and fingers. Every day, all those regions get very colourful - going a pot more purple and blue and very hard to get comfort.
All teh clinical evidence is PV, but blood levels ok. Had bone marrow biopsy and aspiration yesterday, still have some blood tests (`14 in all) to come back and having nerve conduction test on 20 November.
Not sure the medicos will "act" if bone marrow desn;t show anything...but they all feel PV is here and know it most often appears detectable years after EM diagnosed.
For me aspirin, pregabilin and duloxetine give some relied...but life's painful!
I was misdiagnosed with CFS and Fibromyalgia. Probably bc. it is a non descript basket of symptoms that some Dr's will use if they can't diagnose you.
I was 1/2 way diagnosed with EM after 10 yrs of being with my dermatologist. She threw out the word and I looked it up. It made sense. Then I went to my endocrinologist who had a PA that sat down with me and we came up with polycythemia vera. I had to beg an oncologist to see me until I faxed him my hematocrit level that was thru the roof.
In case it helep me guide my doctors, please are you able to share how and why you were mis-diagnosed for so long...and what the breakthrough was re finally getting diagnosed properly? Thanks, and best wishes with your health and happiness.