Polycythemia Support Group

Hi everyone, my name is Sarah. I am 32 years old, diagnosed at 27. My body seems to be different than a lot i have read about. My platelets got up to over 3000 as well as all my other counts being very high. I was on 6 hydrox.pills /per day there were times i was on even more than that. I decided to go off of them a year ago, due to them making me feel very gross all of the time. A few months ago, my counts started to reverse, my platelets are down to under 800, my hct, hemoglobin, all normal... my whites are still rather high, sitting around 20 - 25, and my iron seems to be really low. I am very nervous and scared as to what all this means... has anyone else gone through similar changes? My symptoms are: Very tired, low energy, feeling VERY full after a meal, nausea, dizzy, headaches, bone aches, very tender left side (spleen?), itchy, hot flashes, night sweats, migraines, VERY dry lips that peel and sores and cracks in corners of mouth ( may be low iron , heart palpitations.... I do not read that others feel these things or are going through these things, is anyone out there that has?

Hi Cassiopeia,

First of all have you gone back to see you oncologist? Low iron will cause you to be weak. I am on hydroxurea daily and am low on iron. I am weak all the time. My spleen is enlarged and has been since 1998 when I was told I had polycythemia vera. Part of the disease. I do get headaches from time to time but your other problems I don't know about. Please see your oncologist and let us know what is going on. We are here to help as much as we can.

Thank you for your response. I had been to the doctor last Tuesday, but he was not there due to some family emergency. So I didnt get to ask any questions, which left me feeling scared and frustrated. I will not see him now until May 11th. I still am having the pain in my left side, more like discomfort, with occasional sharp pains. I was diagnosed with thrush last week.. no idea how I got that... I am not on any medication and have not been in a while. The heart palpatations could be nerves I suppose. I do deal with panic attacks ( assuming that is what it is, might be extreme anxiety ). I was on fluoxatine for that, but had a reaction and had to stop. I have been finding that a lot of strange things have been going on with my body lately. Allergic reactions, random health issues, my psoriasis is back in new places, and I havent have issues with that for years... coincidence this is all happening at once? Very odd. Anyawys.. sorry I am just very frustrated and want to know what is going on, I think that having to be careful and pay attention to my body for 5 years constantly has gave me a bit of a medical paranoia.

I've only recently been told I may have PV and get some symptoms similar to you.

I often get dizzy light headed spells, and at the moment I seem to have a continual headache, my bones and joints ache a lot. As the weather is warming up my itches are getting worse and now having a bath is pretty much impossible as it is so uncomfortable. Also I have numbness in my hands and feet and my hands. In the last week I have also noticed my hands and feet turning quite red. Supposedly the itchiness is a fairly common symptom.

I'm not sure what all my levels are, I know my hemoglobin is quite high, but I struggled to take in all that I was being told by the GP when he went through my blood tests.

hi cass,

i to get a most of the symptoms that you get except the only ones i dont get a the cracked lips n mouth , or the sores, but i also have fibromyalgia and diabetis pitted edema in my left leg now my gp thinks i polymyalgia as latley i have found it very dificult to walk due to the pain in my legs, i am on hydrea, and a range of aother meds for other things now also on pregnozone, i try to stay positve but it gets really hard some times i seem to sleep my life away,

take care

Juli

Hi Yes I have all same symptoms as you,doc wuldnt take blood till I reached 5, I have now s9o going next week, see what they do.My white cells were very high but not too bad at moment but doc thinks that because I was on antibiotic,maybe high next time.You know what I find so frustrating you look ok so people dont understand how ill you are.my doc said the most serious thing is risk of heatatack or stroke.I have angina hada bad do yesterday and doc furious with me for notcalling ambulance.In uk no-one seems to get given any tablets or anything,only blood and they reluctant to do that.Its like get on with it you smoke so thats it,yet they dont know what causes it!!

I am glad to have found your posting about the deep breathing/slow exhaling therapy for PV, Jim.

I was diagnosed with Ploycythemia Vera (PV) via bone marrow biopsy in the fall of 2010 (right after starting of my retirement ).

My HCT was 58% initially (with a slightly higher level of platelet), it was brought down to 42% after 7 sessions of phlebotmy during Sept-Dec of 2010. Another 2 sessions were required in June-July 2011 to reduce HCT level from46% to 40%. It has been maintained at below 45% since then.

I never have had any major symptoms other than coldness on my palms and fingers. (Actually my PV was dicovered accidently via blood test for other unrelated minor illness).

So far I have resisted my blood specialist's suggestion for taking hydroxurea (because of the risk and side-effects). Beside taking daily doze of 51mg aspirin, I am also taking green-tea capsule and doing my daily QiGong and meditation routine.

I am anxious to try to establish your deep breathing/slow exhaling therapy in my daily routine. Here are my questions:

1. Does it matter if I do belly breathing or chess breahing ?

2. Must I do deep breathing/slow exhaling while walking ? Can I do it on the bed before sleeping ?

3. Beside drinking enough water, could you elaborate on the importance of diet with this deep breathing/slow exhaling therapy ?

I have a lot of the same symptoms except for the dry lips.My hematologist blames them on the 500mg. hydroxy I take a day.I'm surprised you survived stopping the hydroxy. There are very few accounts of primary Polycythemia spontaneously reversing, have you had a bone marrow biopsy it could be of use to the scientific community.This disease affects everything your blood goes through so when you feel and see symptoms the disease affects other parts of your body that you don't feel or see. Hopefully you can find something that works for you good luck.