RE: Polycythemia Vera
Hello To Every One. I have been looking for a location on the web, where I could write of my feelings, and also ask, questions from other's experincing the same type of Condition I have been diagnosised with. I hope this is the appropriate way to do so. If not, please feel free to let me know, so I can address them more appropriately.
First Let me, Introduce myself,abit. I am a 43 year old female, married, and live in Ontario, Canada.

I have worked in the medical field for most of my life, and do have a good understanding, when reading the information, on the topic. BUT ALTHOUGH I UNDERSTOOD I also experience other moments, when I can't recall, even the easiest of things. I HAVE HAVE MORE QUESTIONS THAN I CAN THINK !!! I am Angry and Confussed,& Fearful as to the Future..

What's happening to me, and what I loved as a Job, I have lost due to this Medical problem. This is the one thing that has scared and hurt me the most. MY IDENTIY AS A NURSE, HAS BEEN TAKEN AWAY, I HAVE LOST MY ABILITY TO REMAIN A CAREGIVER, TO THOSE WHO NEEDED HELP THE MOST. why me !!!!!!!!! The biggest LOSS of all is MY INDEPENDANCE SPECIFICALLY "my Driver's Licence. Being so dependant, prior to this, I have become a total hostage to my home. I must now rely on Family, Friends, Neighbours, to take me to appointments etc. I feel like I'm being a burden, although if the shoes were on the other's feet, I would be more than willing to pitch in and give all the help I could to those with a health related problem. Without question.

Been recently and finally diagnosised, I am in the stage, of denial I feel, although I have know myself, that something was not just rite,but, I could not put my finger on it exactly at that time. My diagnois, was caught accidently, after a bloodtest. The was ,my introduction to polycythemia vera. this diagnosis, came following a total collapse at work,(at first they thought I had a heartattack, which in the end was not the case.)
During this total collapse at work, I experienced a mental type of confussion, things I knew well, I could not recall, and as far as pain goes, it was overwhelming& Constant. !! in all extremities.

Can anyone tell me if they experienced any of these types of these experiences of overwhelming constant pain ?
Anyone with the same experience, persay. ??????

Also I have "periods" frequently of extreme fatique & confussion and the unablitiy to actually think or even speak on certian occassion, it was very scarery.

This did not happen all the time, buy when it did, it was so embarrasing.. Has anyone else felt or had these specific symptons & moments happen to you. How did you cope with themm. ??

What about other added symptoms, what types of added symptoms, have you experienced. For me, I now deal with ^ Blood Pressure Measurements. Contant Blood Testing has to be done, and will continue on forward, for the remainder of my life, just to keep an idea, on the levels within my blood.

Two main things cause me a great deal of embarrasement, only because they are so apparent and there is no way to hide the EXTREME REDNESS OF MY EARS... THEY ALMOST GLOW, LIKE A BURN.....this,& due to either other's concern or because other's belive I am embarrassed, or my feelings are hurt, they make a point of asking " What's the problem. I have not shared this with anyone except dear close friends, and family, I can trust completely.. Do you have any suggestions, which might help me deal with this particular part of the problem. I would like not to tell everyday acqaintances, I would prefer to keep this a bit more confidential.

Firstly, because of very small veins, it is hard to get any blood really to even to the test, it is a very painful procedure for me, my arms become totally black and blue. i MOST OFTEN HAVE TO WEAR LONG SLEEVE SHIRTS... Any suggestions, or idea's to handle this particular problem.?????/

I know I am not the only person who has this type of Disorder, but I would truely like to talk with those who too are dealing with this medical type situation. I would be interested in any advice or suggestions truely, to help me become a bit more become accustom, to living with Polycythemia Vera.

I am totally appreciated of the space this group has provided, for those to come forward and discuss eachs, medical condition, in a caring and confident manner. Thanks for providing me a way to soundoff, without having to do it thru, my family. I love my family so much, and do not wish to upset any of them, nor do I want them to treat me in a different manner than I am accustom, I want to continue to be the Wife, Mother, and the Daughter ..... God love them all, and thanks for the Wonderful Blessing, of Providing me with a Family, that loves me, as much as I love them. I hope that I will remain with you all for a long time to come.....
Thanks to all the new friends, who wish to respond, I will look forward to hearing from you all.

Sincerely,
Dawn Red Valentine.

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[Dawn Red Valentine]

Thankyou Sjniick, for your kind words. It has helped alot, just to see someone else who understands. I am sorry you too, have become sick, it's not much fun, and at times is so painful, you do not know which way to turn. By merely writing that letter, I feel much better, Its like I took over control, and do not feel as frustrated as before. I will continue gathering information, and trying to be the healthiest me I can be.. Thanks so much for your response, truely appreciated.

I understand your problems stated & the one you were afraid to state.

They should have immedately started you on a blood reduction program of a pint every three weeks, then every 4 weeks, & most of us can get by on a pint every 6 weeks after stable. There is no cure.

When mine was discovered my blood pressure was over 220 & heart rate was at 140 resting. I had severe headaches & muscle pain. I was not getting much oxygen to my brain & muscles. That is probably why you passed out & had confusion.

If you did not have brain damage & the blood reduction is working I do not see why you lost your job.

I never missed any work other that a few sick days.

I go to the vampire every 6 weeks & lose a pint of blood. My RBC is now back in the normal range.

I have seen others on the internet that have beaten this for 20 years.

Good luck,

G

Dear Gina, Thanks for responding to my message. Yes I now understand the ramification's of this illness. For me, and because of the work schedule and the pace, and also due to the difficulty trying to come up with a dignosis, seemed to take forever. My family phyisican, has seen such a drastic change, that he has refused, and doesnot feel, I would be capable of keeping up with my duties. As I said things have changes so much. I use to be a strong as an ox, but those few times, that blood had to be removed, it was overwhelming. I have the type of veins, which makes it almost imposible to get blood ourAS IT IS. I have begun a taking Chemo Meds for the time being to see if perhpas this may help in the long run. I feel just as sick or even more so, at present, but in about 27 more days, we will see if the medicaion is working, or aleast improving the situation somewhat. As far as having blood removed monthly, that will be left as a last step option, because of the severity of that treatment.
I appreciate you writing me back, it gives me alot of encouragement and hope Gina . take care, have a super long weekend at the end of August, Memorial Day Weekend. Dawn Red Valentine.
Ps: Thank you both from my Hubby David, it has helped him to deal with this situation.

here in the states the only treatment I know of is to drain a pint of blood every so often to keep the red blood cell count down. It works for me & I forget I have the disorder. I just plan on beating it for more than 10 years.

I am heading for the beach for a week. I wish you luck in your treatment.

G

Dawn,
I would also encourage you to read and register at the ACOR site for MPDS. This site is focused on medical science and you will get accurate information there. It is very unusual to start with chemo as a first line treatment rather than phlebs first or at least both. You also didn't say what drug or how your doctor reached this diagnosis. Bone Marrow Biopsy? MPDS are very complex and the average hematologist is simply not equipped to manage or diagnose accurately, although most think that they are. PV can be well managed and it is the most common of the MPDS. Most people are diagnosed before they are passed out on the floor. The key is an good MPD specialist. Don't be afraid. Learn everything you can so that you can make informed choices. Then hopefully you can return to a normal life like the vast majority of PV patients.
Casey

Hi All,

I know this may be changing the subject slightly but I am a 28 yo in the same situation as Dawn. My Doc's have recently said they THINK I have primary polycythaemia after a bone marrow biopsy but cant diagnose since my white cell count is normal and my spleen isn't enlarged. I have had every test under the sun for secondary and they have all come back clear. My concern is the constant light headness, does anyone else get this? I started get light headed and confused in December of last year and went to the docs who said I had an ear infection. I took the meds but the dizziness never went away so I went back thinking I was going nuts or having panic attacks. That's when I got the blood test and I think we all know what comes next. To make matters worse they now tell me I have a balance disorder but I cannot beleive that there is no connection to the polycythaemia. I have venesection every 3 weeks ish so I know my blood count is now normal, and this really worries me as I cannot get rid of the confusion, light head, feeling ill etc. It that bad I am just about to leave my work at 28!

What other symptoms do otehr PV'ers have? is the spinny head one of them??
Cheers

Jamie

Hi All:
I was recently diagnosed as having Polycythemia. At first the Hematoligist/Oncolagist said that it was secondary to sleep apnea. Later I happen to see a letter to my "Primary care Phisician...HMO" that said he felt like it was primary and not secondary. The bone marrow biopsy showed that I also have "Smoldering multiple Myaloma". He also said that these do not ordinarlly cause the type of confusion that I was having. Luckly My PCP is great about sending me to any specialist he can think of. They found that my inner ear was shot on one side and severly damaged on the other. All the while I can hear fine! They explaned it to me that the dizzyness and confusion was my brain trying too hard to conentrate on doing mondain tasks like walking and talking that it could no longer handle two things at a time. I eventually lost my job because I could no longer do the detail oriented things I had been used to doing. (if only I had known it was inner ear related?) whith the Polycythemia I started out having Phlebs at 3 months, then 2 months then 1 month then 1 month later my hematicrite was 51(stroke range) and they moved me to every two weeks. As a side note I was recently dianosed with Diabeties and as soon as that was under controll the bloodwork has been with range for the last month?? As for the Inner ear problem; 4 weeks after taking the diaretic and some kind of Syrup. One day the "Fog" just lifted on my brain. Suddenly there was no more confusion and I was thinking like my old self again! If you are having dizzyness and or confusion please check with a Inner Ear doctor because it deffinatly can be "Fixed" with meds.

Take care and Clear minds to you all!
Tim

Jamie
These symptoms are typical PV. There are special tests on red cell mass to diagnose PV. Dr. Spivaks at Johns Hopkins has written many articles on this subject. Look it up in medline or search on the web.

Hi All

I have the blood volume test which should a true red blood count rise (hematocrit level of 0.62). I have also had pulmonary lung function tests, cat scans, renal scans an oxygen level blood tests. I always was convinced that this increase was soley down to the fact that I smoke, but according to my GP and I have already had a blood test to see carbon monoxide levels and he said that if they were at all abnormal they would instantly blame smoking too, but they didn't and as I said they believe I have primary polycythemia after bone marrow test. Must admit to be being as confused as hell because I thought it was unheard of (ish) in people under 30 and I thought all PV'ers had an enlarged spleen or increased white cell count which i don't.

I still bloody hope it is smoking that is doing this, but am a little concerned after last doc visit!

Thanks all!

Jamie

Hi, I, too, have been diagnosed with Polycythemia Vera. My blood levels were elevated including white blood cells. My Primary Doc referred me to an Oncologist/Hemotologist and he took an Erythropoietin level which was low and indicated PV. He immediately had blood withdrawn. 1 pint or unit every other week. I've had 5 pints removed altogether. The last one Aug. 8. I've been feeling droopy and having a few mental blanks, so I think maybe it's time for another pint to be removed. There is no cure, just maintenance. Sometimes I get SCARED, I had a blood clot 2 years ago. I was diagnosed months after that, but that is a danger of PV. Anyhow, good luck to all of us and hope to hear how you are all doing. Maggie

I'm undx and really getting P-Oed with my doctors. They look at me (33 year old mother of two) and are convinced I'm not "consistant" with the diagnosis of PV.

I've been an Enigma for too long and the problems I face now are too real...I've already at some time previously suffered from a stroke..not TIA a stroke probable my best guess is at age 28. I had trouble with one arm for months (still have that) a left sided visual field loss and nerve pain, muscle spasms etc from residuals of the stroke.

That's the end result in my opinion of PV.

Let me share with you my Labs.

Since 1994 I've had elevated WBC currently 18.8
they say the differential is normal but it has changed with Eosoniphilia, Lymphocytosis and Granulocytosis.

RBC is usually somewhere around 5.49
HCT 16.9
HGB 48.5
MCH is hish at 31.1
RDW is low at 11.3

LFT's
ALP (alkaline phosphatase ranges but always high)
140-195

I have previously had an enlarged spleen and now have both enlarged spleen and liver

Of course the stroke.

I get every last symptom you all descibe in addition the itching is terrible (especially following a warm bath/shower)

I get petechiae often, have seen it in the hospital and still have no answer. Bleeding gums, nose, heavy clotting and bleeding during meses you all get the pic. bruising, bone pain, headaches, fatigue, night sweats and occasionally pneumonia.

I'm on aspirin therapy, but my PCP told me to donate blood as my differential suggests no infection...I always have a problem when they are finished screening me for whatever it is they do and they tell me they can't take my blood (and I'm O- to boot)

I know in the near future I'll need to have an LP and/or Bone Marrow check. I'm not dreading these, but I haven't had an EPO or CR51 test for PV.

I was told my Leukocytosis is unconstitutional and probably normal for me.

My problem or question I have is.....Everywhere I read about petechiae and enlarged spleen etc (usually it is caused by low platelets right?)

My platelets fluctuate depending on my period and range on the high end of normal to a high level alltogether.

I thought an enlarged spleen would chew up plates and the petechiae was caused by thromcytopenia, I have thrombocytosis (mild) like 420 mid cycle and 375 during my period this has been consistant for years.

No one can answer my concerns or questions...They all just feed me more drugs, right now, aspirin, Lortab, Magnesium-malate, Dex-Alone, Ambien, Klonopin, Remeron should I go on.....

Sorry to ramble, you guys know your stuff, why is so hard for them to say yes or no...I was told it was secondary due to my smoking,,, smoking doesn't cause leukocytosis or spleen enlargement so what gives?

anyway, I'm seeing a neurologist for my cerebral artery occlusion, my hearts fine and coagulation system....too me, just too much blood simple right, wrong!!

They are also questioning if my stroke is actually Multiple Sclerosis....never ends...oops
forgot to mention my BP has never been under 140/95 and has recently been as high as 162/105...my heart rate resting is 139 bpm at sleep it's around 99.
I have had some palpatations or ectopic beats as they call them but they say my heart is fine.

My Mother died of Cancer (spindle cell of the retroperitoneam) when I four (she was 40)...my dad, my brother and his brother all had their first MI's at 42 with angio and stents....The gene pool is looking pretty grim....

Take Care and God Bless
Jessica


[This message has been edited by RareEndo (edited 09-13-2003).]

I am a 68 year old woman and was diagnosed with polycythemia vera in May. I have had 5 blood withdrawals now, and while I am feeling better I still have a lot of pain in my legs. Aching like I have the flu, and leg cramping as well. My itching of legs after a shower got better, and is now back. My face was very red, and is now better. The hemotologist has just prescribed hydroxyurea for me. Well I have not taken any of it yet(sent off to insurance and just recieved the medecine yesterday) My concern is taking this medication. There are so many side effects, and I am wondering why the hemotogolist did not discuss this with me. What the medecine is expected to do to help me and explain what the side effects are. It is really scarry to me to take a chemo medication. It is also related to earlier events of lukemia.
My counts have been as follows
RBC - from 5.67 down to 4.97
WBC - from 17.1 up to 22.8
platelett - from 543 up to 593
After the 5 phlebotomy's true the red cell count is down, but my symptoms are coming back after a brief relief.
It just seems like the doctors just don't know what to do with us that have this disease. It's like wait until you have the blood clot, or the stroke, or the heart attack, and we know what to do about your treatment, but now we just don't know what to do with this disease.
Any advice from anyone. could use some advice

If they removed 5 pints of blood from you since May the blood should have thinned out & not be so stringy or clumb on withdrawal.

My head & muscle aches dimished with each pint removed for a couple of months. The head ache was gone after the first one.

One pint every 6 or 7 weeks is all I do now. I take 2 to 4 Ginko tablets & a 81mg asprin each day. I buy them at Sams Club.

Most doctors do not know anything about the problem since it is so rare. They do not know the cause or a cure. Just drain the blood to keep it under control.

Good luck,

G

I kept reading that this is a rare problem (PV) When I mentioned this to my hemotologist, I think I messed with his ego a bit. He said he treats quite a few PVs that after all this is his job. I have the feeling he thought that maybe I thought he wasn't qualified to treat this. I do have confidence in him and particularly in my primary. Of course, I poke my nose into it, always asking what my blood tests are, and get copies of the lab work. I feel I want to be especially careful since I had a blood clot 2 years ago. My blood work was O.K. then. I wore a (badly fitting) knee wrap to work because I have arthritic knees and I kept readjusing it all day. My leg became huge and hard. I spent a week in the hospital, and then 6 months on Coumadin. Thinking of you all and hoping we'll we successful in controlling this unusual problem of Polycythemia. I'm not happy we have this problem, but I am glad to have found you all. Support, sharing and venting is helpful. It's kind of a lonely feeling not have anyone who knows what this is like. Regards, Maggie

Always get a copy of your tests.

The research that I have read indicates that PV is about 2 per 100,000 population. I consider that rare.

I also have Mosaic Klienfelters. That is about 1 in 500 males.

I also have Gynecomastia. That is about 1 in 4 males.

G

G - Sorry for your other problems as well as PV. Hope you are doing O.K. or as well as possible. So far 5 pints of blood withddrawn from me (last time Aug. 8) have held my blood labs. I see the Oncologist/Hematologist in 2 weeks. But I also have another problem that cropped up at the same time. I have 2 herniated discs and spondylolithesis (whew that's a mouthful) one bone of the spine overlaps another. Spinal fusion is the only fix. I'm not interested in surgery now. Pain pills, thank you very much. My point is though I never feel really wonderful so I can only guess the blood withdrawal is doing what it should, according to the labs. Good luck to all of us. Maggie

Hi Dawn, I am in Winnipeg, Manitoba. and I have recently been diagnosed with PRV. I still am not sure if I have it or is something causing my blood count to increase. I have had 4 phlebotomies. 1 every 2 weeks of 500 ml eac h time withdrawn and the blood count has come down, but the platlets are very high 685. Dr says once they hit 700 I will have to go on medication for the rest of my life. I am only 36. What scares me is all the websites say once you are diagnosed your life expectancy is 11-15 years. Has your Dr. told you anything like this. I am so flippin scared. Dr says as I get older the problem will get worse and I am extremely scared of getting Leukemia because of PRV. I just got married last year and am an only child and would like to have a family and make my parents grandparents, but I am so scared of what might happen though the 9 months. Right now I am just taking an asperin a day. I go back to see Dr in Jan 9 for another count. In May my platelets were 635 and in Oct they are 685. I know how you feel because this is not suppose to happen to me. I do not drink, The only bad habit I have is I smoke and I have even cut back a great deal, to 4--5 a day. If you would like to chat about our problem drop me a line.
Take care
Cheryl

Hi Cheryl - I'm not Dawn. I'm Maggie who has been diagnosed with PV also. I, too, have had phlebotomies (5)over a period of l pint every other week. My blood is not in the normal high level. My Doc told me that with treatment, I should be able to live a normal life for l5 yrs. But, I am 72 so that doesn't sound too bad. I am so sorry that you have this problem at so young an age. I have family dynamics that make it difficult for me also. When I read the info on PV, it scared me too. Be sure you talk with your Docs about your fears or perhaps get some counseling to help you. I know it's frightening. My thoughts and prayers are with you. Please let the rest of us with PV know how you are doing. I see my Oncologist/Hematologist this coming week. I'm always on the lookout for blood clots, because I've had one in my leg two years ago. I think I mentioned that previously. My best wishes to you Maggie

Just found out I had PV, the asst read my blood report wrong to me over the phone, so when I went in to see the Doctor I was in shock! I thought about it on the way home......at least I know why I am in pain now, and having blood taken, is better then having chemo, so I guess I am grateful for that. The Doctor put me on Bextra for the pain until the blood gas tests are back, and it really seemed to help with the pain. Will the blood banks take our blood?????
Thanks,
Susan

Hi Susan, They will not take your blood for donation. It also sucks because I am also O blood, which is for leukemia patients, and I used to donate 8 years ago. I also have Polycythemia (so they say), but I have no symptoms, not even an enlarged spleen. I went for a referal for a gynacologist and they told me they are going to do a complete blood count because my husband and I are not playing safe and I am not getting pregnant for 2 years, and boom, they drop this bomb on me. I am only 36. So as for donating blood. No way, sucks hey!!!!!!!! I am going for a second opinion and if they still tell me it is, then I am going to the Mayo Clinic, because our health care in Canada, really sucks and if I can pay for a correct diagnoses, then so be it. I can't take the money where I am going to I might as well spend it now, It is no good to me if I am not here to enjoy it. I would rather pay at a private clinic and know what the problem is. They say is could be a chemical in your body that is making the marrow overproduce. Could be the environment you work in, or the ammonia in windex or anything like that. Cheryl

[This message has been edited by Putzpatch (edited 10-10-2003).]

HI - No, they cannot use the blood that is withdrawn. I am A neg.but the clinician that phlebotomies me says they have to dispose of my blood. Though I have just a couple of symptoms, the main diagnostic tool is blood work. Also an Erythropoieten level was taken which was low and indicated a positive diagnosis of PV. I go for another pint withdrawal, this week. I don't mind, because I feel good after. That will make 6 pints altogether. Maggie

Hi from down under,
Same as everyone i have been diagnosed with Polycythemia Ruba Vera, worst thing is i'm only 39 and i wasn't expecting anything like this at my age!!
Apparently i have had this for many years already, the reason it was discovered was through a blood test because i have suffered from cronic cramps throughout my body for over 20 years,,,i have been seeing doctors all this time and all they could say was take biquinate tablets as there's nothing wrong... wouldn't i love to see them again!!!
What i would like to know is what you guys have been told by your doctors as to what your life expectancy will be??? I know you should'nt read to much into these web sites as the accuracy is not water tight.. My doctor seems to think that i will be fine for ages yet and with bleeding i will most likely cark it from some thing else way before this disease.. what have you been told???
The part that i can't understand is i have always been and still am very active person who lives life to the extreme.. my greatest passion is very deep scuba diving,, but now i'm told that having this disease is a total contradiction to diving because of the risk of decompression sickness due to the thicknes of my blood,, what i can't understand is howcome i have not had decompression sickness yet as i have done over 6000 dives with absoulutely no symptoms at all?? Has anyone experienced this problem before with diving or do you have any feed back???
Thanks!!
Sam.


[This message has been edited by AquaSam (edited 10-20-2003).]

Hello Group,
Well it's been a while since I last have been able to get here to say hello to you all. For the last several months, I have been extremely sick, the pain is overwhelming at times... medications are helping to ease it up, but it won't completely leave. Dr has placed me on the med " hydroxyurea", I haven't felt any relieve as of yet, but keeping finger's crossed this will eventually help.
Due to the problem with my getting blood from me, and because of such small veins, etc, my Dr. has promised me, that the phleps, will be the very last step, in my case. In his opinion, this is a better treatment for me..
Although this drug, is making me nausated & causing vomiting, & major headaches, loss of appetite,I continue on. It has not been easy at all, I get very tired easily.
I was wondering is there anyone else taking this med, and wondered if anyone is experiencing these side effects..or what are your reactions to taking this medication? Is it helping in your case.
From my understanding with Dr. this drug therapy, will be a long term treatment for the polycythemia vera.
I will be having my first blood test this coming Monday, ( for this they use a baby needle to get just a small amount of blood for testing.. the only spot they usually can get it is from my right hand, between index and 3rd finger vein...
Crossing my fingers for improvement with blood counts.
I just wanted to address AquaSam, I was given an information packette, concerning polycythemia, in this information it stated that 15 years following diagnosis, is about the life span of those with polycythemia, but then I have read other's statement's here, that say you can go on to live a normal life. ???? I haven't brought this up with Dr. as of yet, due to the fact, hubby is usually with me, and I do not want to upset him at this stage, any further. Like so many other's have said, we're so young, how and when did this happen??? It's a frightening thought, but as with life, things just happen, why not sure.
I do know that a positive attitude, will go alot further, than sitting around worrying about the possiblities, in the end, does it help. I think not.
I want to send my warmest and deepest blessings to all of you, I pray that we will get an anwer to this diease, and that even the smallest glimmer of hope will help find a sucessful cure for all of us.
Take care of yourselves, I post again when I can,
thanks for beening there.
Dawn Red Valentine

Hi Dawn First of all I'm sorry that your veins are not able to support phlebotomy. I'm the person whose Dr. said that with treatment I should be able to live a "normal" life for l5 yrs give or take. I get phlebotomy, at first it was every two weeks; have had 5 pints removed; now I just had another one done a week ago the first since Aug 8. Normal for me now is doing house work, yard work, lunch with friends, visiting my former residents (I was an Assisted Living Coordinator until I was 70 I am now 72), shopping, etc. The only problem is that I have a severe back problem that I just found out about at the same time I was diagnosed with PV. Two herniated discs and spondylolithesis which can only be fixed by spinal fusion. Not going that way. I take pain medication (Tramadol originally ordered for arthritis) every day, and the Dr. has now ordered Morphine if the pain is too severe. So far I haven't needed to take it. I'm also sorry about all the pain you have. My hemotologist is worried that with the back pain, I won't continue to live my "normal" life. I assured him I'm trying to do just that. Of course, being retired means a lot less money. I support myself and have a struggle every month. I always try to set a goal for myself. Mine right now is to continue to watch my health closely. I have blood work every 6 weeks, and see both Docs every 3 months. It was more often at first. I sincerely hope you can find some relief and that things will improve for you. Regards, Maggie

How's everyone doing? Haven't heard anything since October. Hope you all have been doing O.K. and I wish you all a good Thanksgiving. Hope to hear from some of you. Maggie

I've been on hydroxyurea for over three years, 1 x 500 mg cap a day. I remember feeling pretty bad for a few weeks after starting but got used to it.... I suspect feeling okay keeps reaching lower levels of acceptability...but my platelets were creeping up to the danger level again...nearly 950...so I've had to double the dose to 2 x 500 mg caps per day...and for a few weeks felt that same tired sort of awful but now it seems to have got back to a better place. Had a test today to see how two weeks on the higher dose affects the platelet count. I'll report later.
Meanwhile, i'm chasing up Abbott Labs about getting supplies of pipobromin.
Google it with polycythemia. It's used widely in europe and was first created in the mid 1960s...so its an old drug...but from my reading and the Italian studies...it targets platelets with seemingly few if any bad side effects.
Abbotts Australian office supplies it to the So Pacific but it is not used in Australia itself. It was 'gazetted' here in NZ in July 2000, which means it is available to prescribe, but is not available. HUH...means they can market it but don't. I'm hoping to round up supplies and give it a try.
I never pay for blood tests or blood lettings and our drug costs for those drugs which are 'on the list' are miniscule. I am sad for those of you in America where it seems the cost of health care leads to extra stress just when you need it least. I am truly thankful to be living in such a decent and caring place as new Zealand.

Ron [56 years old]

Hi Ron - Interesting post especially for those with Polycythemia Vera on medication. Can you just request medications from pharmaceutical companies without a Doc's script? Sounds like you can just self medicate. Is that possible? True that medical costs and insurance costs are very high here but my Docs themselves are very caring and decent. I have the highest regard for them. My insurances have been pretty good when I was employed. I payed 1/3 of the cost, and my employer paid the rest. Only a $10 co-payment and medications $5 or $10 per prescription. Now I am retired and am on Medicare and have a Medigap policy. That's a little different story. Won't go into that only to say it costs me more. And, of course, since I retired I gave up my fairly good salary so the money situation is a lot tighter. But in spite of everything, I love America. Regards, Maggie

:bouncing:
Hi Group I am interested in seeing what side effects people have had on the drug hydroxyurea. I have read some things like it weakens your eummunity and leaves you weak. Now im wondering if i will be able to work and how will this effect me during the flu season.
Any information anyone can give me will be greatly recieved. Hugs and Prayers
Jammin Mom

Hi JamminMom - Glad to hear from you. I am not on medication for PV, but hope someone can answer your question. Did you read the previous post on Pg. 6 of this topic? Ron, I think his name is, has been on this medication for awhile. Also, don't hesitate to ask your Doc anything you want to know. He should answer your questions. Good Luck. Maggie

Hi Gine, Do you have Polycythemia. Do you know others that have it. I see you have talked to people who have beat this for 20 years. They why does the Dr say the survival with treatment is 9--11 years?? I am going for more phlebotomies next week 500ml every 3 weeks and she wants to put me on Hydrea which tells the bone marrow to stop producing and try to bring my platelet count down to norm. It is at 704 right now. Any information that you have about Polycythemia would be greatly appreciated. My husband and I are a total wreck over this. I think I have shocked my body because I am very weak and tired all the time and very lazy since they told me I had Polycythemia

HI Red Dawn. How have things been going with you and the Polycythemia. I am still trying to figure out if this is what it is. I am going for a 2nd opinion in Apr 2004. Do the Dr's have your under control and have they brought down your counts. Hope to hear from you soon
Thx
Cheryl

Hi,
My name is Nancy.I related to your story completely. I am a lab tech for 30 years.One day I walked into my lab and could'nt for the life of me turn on my computer. Before this time I kept telling my md that I was so tired , my bones,muscles,skin ached. He sent me to have my head examined. All in 1998. I ended up just retiring from my job because the fatigue and memory loss were so bad. In Jan. of 04 my husband told my md he had to help me,he did a cbc and my crit was 62,plts 950,000,hgb19.9.
I just discovered this site and you this am. Would love to hear from you.

My mum has been diagnosed with pv 12 years ago and managed it okay. Recently she had her spleen removed because it was very enlarged. Since then she appears to have to developed some kind of leukaemia and has to be on chemo is there anybody who's had experience of this?

I have noticed a few messages about Polycythemia Vera. My mother died in 1987 of this awful disease. She had it for 2 years while always getting rid of her blood. This disease caused liver failure, Budd Chari (sp?) Syndrome. Prior to being diagnosed she suffered headaches, legs itchy after taking a hot bath and her head would feel "full" alot.

I had severe headaches & muscle aches 5 years ago;
They found:

Red cell count ---6.6 H
Hemoglobin -----19.7 H
Hematocrit -----57.9 H

every 6 weeks now a pint of blood is taken & all my levels are in the upper normal ranges.

JinL; question for you, I am a 37 year old caucasian male, I have been going to the hemotologist for over a year now, Hemoglobin has been in the 17-17.2 range..hematocrit is 50-52, rbc are normal...I don't have any headaches but I have had a achy right forearm for about 8 months, I read my patient file and the Dr had mention PV as a possibility..My question(s) how old are you, and how did you start to feel before diagnosis? Another thing i should mention is that I have also been diagnosed with hemochromatosis,I am thinking (hoping) my readings have to do with this more than PV. Any comments would be appreciated...Thank You

Hi,

Having read these boards for the last few months i thought I'd post to ask a few questions.

I'm a 30yr old male.

Last October i was informed I may/may not have polycythemia due to my Haemoglobin count being raised. My RBC peaked at 183 (not sure what that's in $'s, i just know the normal range is between 130 - 180 here in the UK), but continued to drop since then.

I was then given an appointment with my Haematologist in December for further tests, tests which included a nuclear medicine test called a RBC, EPO (can't be sure if that's what it's called) and finally received a BMT which luckily all tests came back completely normal.

My haematologist says that I had a raised count due to the amount of alcohol, smoking and lack of water I was drinking, was lucky if I was drinking a litre a month. i smoke 20 per day, and drank about 1-2 litres of vodka/coke per week.

Having now given up the alcohol i'm still a little paranoid that I may have PV and these tests were maybe not accurate.

I would just like to ask if these tests would've picked-up if I indeed did have PV?

hi all again,
i'm 43 and have PV. after 10 phlebotomies, i started interferon injections last July and it works wanderfully!!! no secondary effects, a part being always tired.
fortunately the french health systems pays 100% for everything.
if anyone has questions about interferon, please ask....

massimo
www.chauffour.com

Hello everyone. I am so glad to know that there others who understand what I'm going through. I am 30 yrs old and have 2 children. I was diagnosed almost a year ago with PV, I had been sick for a while and no one could find anything, until my neurologist kept testing my blood and sent me to the hematologist. In 1996 I had a blood clot in my lung, and til this date Im not sure what caused it, I was on PHEN PHEN to loose weight at the time, so maybe that was it. Well, back to the specialist or so they say they are. She tested me over and over and just told me that my platellets are extremly high and to take plavix. Meantime I quit seeing her and kept getting sick, first the tiredness, and dizziness, confused, headaches, than my arms would get numb, I woke up one day not remembering what had happened the day before, I dont remember going to work or picking up my kids or how I even got home. I was crying because I thought I was going crazy. It got to where my PCP starting giving me antidepressants, which I only took for a week or so, because I knew deep down it just had to be something else. I kept going to my doctor about my pain and dizziness, I couldn't function at work or at home I was about to loose it all. Finally my doctor sent me back to the Hematologist/Oncologist to recheck my platellets since they were high again. First thing she did was a bone marrow test, a week later she diagnosed me with PV. She first prescribed Agrilyn (very very Expensive) and it didn't help so now I'm on Hydroxyurea, which has helped some, but Im still extremely tired all the time and I get dizzy, I dont know if it's just me but I have gained more weight. The dr, told me that the medication could cause leukemia and that I would need constant Phelbomies and lab work to check on this. My back is already injured and it just feels worst everyday, I can't sleep or function well anymore. I wish that doctors would find out more information and share it with us, I have been with a ringing in my ears for months now, and I tell the doctor and she ignores me or prescribes allergy medication. I think she lacks information on this, and probably knows less than I do. Im like all of you, I dont understand this illness and why did I get it and will my kids get it to, I get frustrated not knowing what to do about it, and I worry every day.

Recently my doc suspects me having Polycythemia, and he wants me to undergo R M C test (red blood mass count). Im really got scared wen I read about it. Im 27 now. is there list of docs who are specialised in trateing this disease in chicago area. please let me know. Im really scored to read that people live only 11-15 years with this disease.

Nice to see people sharing their experiences here for benefit of new patients like us. Thank you

Remember the 11-15 year figure has been carried out using data from 60+ year olds. The fact you're 27 means your body will be in better shape.

Also, the RMC test is nothing to worry about. They take blood from you, take it away to tag it, put the blood back in one arm, wait for 10mins (can't really remember how long), then draw blood from the opposite arm.

Tam, how did your blood tests go?

My daughter is being tested for polycythemia on July 15. We found out she had high hemoglobin, hemocrit and red blood counts when taking her for blood tests in Jan. 2005 due to headaches. She is only 9 years old so my husband and I are very worried. How can this be happening to a 9 year old? I'm trying not to worry too much till we have the radioactive chromium test done but I find myself thinking about it every day. Does this mean she might only live to be 25 or 30 years old? I haven't found a web site that tells of us of much hope.

YoungWon

Youngwon, don't read too much into those sites until you know for sure, it's really not worth it.

There are a few benign conditions that can elevate RBC's, especially in a child so young i.e. Asthma, allergies, sleeping disorders, etc, etc........

Thank you BlackJAC for those words of hope. My daughter actually does have Asthma as well as food allergies which cause iching(eczema). Hopefully after her test we will have a good report. There are so many symptoms my daughter has that are symptoms of polycythemia (ie. iching (eczema), headaches, dizziness, sore gums, redness in her face and toes, shortness of breathe (asthma) and of course the high hemoglobin count (170). Her platlet levels are normal and it sounds like people with polycythemia have a high platelet count so that also gives me hope. I am 30 years old and have my one little girl and one 8 year old boy. I can't imagine loosing either of them.

It's so nice to have this site set up for people to talk about some real important issues.

YoungWon

Other than the itchness and asthma I too had all those symtoms, it really, really dosn't mean it's polycythemia vera. My symtoms were caused by a bad lifestyle. All my counts are now back to well within normal limits and have remained so since I took action. I no longer require appointments/treatment from my haemotoligist and GP.

There's 3 main types of polycythemia:

Primary

Secondary

Relative

I suggest you do a search for relative Polycythemia as it details benign conditions such as those I mentioned. R-Poly will mimic the symtoms of the first two.

I wish your daughter and yourself all the best in the coming weeks and here's hoping everything turns out fine.

Thank You BlackJAC. I will let you know the results from the July 15th appointment. Thanks Again.

YoungWon

I am worried because my father was diagnosed with pv about three years ago and his hemo counts were up to 58 and that was above normal. He is only 46 now and refused to go to the Dr. for 2 years! He finally went when my son was diagosed with sickle cell trait. He went to get tested for the trait as well because we are not in the normal race group that carries that trait. When the tested for the sickle cell, they checked his count and it had dropped to 46, a normal score! The Dr. said it looked like he had either gotten better or had never had pv to begin with. All the research I have done says that there is no cure for the disease, any more info on your end? :confused:
My question is that I know that one of the flags for diagnosing pv is abnormal hemoglobin. That is what made the hospital test for sickle cell on my son. My dad is usually red, but he does not have any pain or confusion. Could he have been misdiagnosed? Or do the levels change like that after 2 years?! Any information would be helpful. ...Sasha

I just wanted to say that my daughter, received her results back today from her total blood volume count and she does not have polycythemia. Her doctor may want to do a bone marrow test in a few months if her blood gets any thicker but right now he is going to leave her be. Her red blood cells are a little high but have not gotten worse since the last test. We'll just keep praying and maybe the problem will go away on its own. Her symptoms are the same - headaches, stomache pain, iching, asthma, and dizziness.

That's brilliant news. Not that i expected it would be anything sinister in one so young. As I've said, It's probably no more than a reaction to one of her other conditions.

You're probably better staying away from medical sites and not reading up on conditions that she may, or may not have, as we tend to read too much into things that we don't really know anything about. I can guarantee that you were making yourself more ill (with worry) than what your daughter ever was just by reading half the garbage out there. Too much information in the wrong hands can be a very bad thing. That's why they're specialists and we're not.

I wish you and your family all the best for the future.

Ps REMEMBER, in future, don't go reading up on medical conditions until you know for sure :p

Dear Dawn,

There is an absolutely wonderful site for polycythemia and other myeloproliferative disorders. The site can be found at mpdinfo.org. Be sure to sign up for "online support" when you get there! People with this disorder from all over the globe can give you some excellent advice - especially Joyce!

Hang in there!

Fred

Well, my 10 year old daughter was told she had to be checked again after one month from her Blood vol test back on July 15th, so we had her CBC done August 20th and it came back very high in RBC, Hemoglobin, and HCT. The doctor was so scared he hospitalized her for a full week. During that week in hospital many tests were done. They checked her blood gases, 24 hour urine test to check for tumors on or near the kidney, ultrasound of her stomach, chest X-ray, and a bone marrow aspiration. We received the results from everything except the bone marrow because that test takes a week or two to complete. Every other test came back good. The bone marrow should tell us if she indeed has Polycythemia vera ruba. I sure hope not but our odds are not looking good if everything alse looks normal. We should have the result by September 14th. The strange thing is, she is feeling great.

Youngwon

Dear Dawn,i can feel your pain.not just physically but emotionally.i too have been experiencing similar problems.i was dx'ed just two mos. ago,and have a lot of questions about the condition,what to expect in the future,etc.as i reflect back i realize i have probably had Pv for some years. i am always profusely sweating,even in winter,face is beet red a lot.my fingers and feet hurt a lot,sometimes when unbearable i will take ultram,which my hemo dr. says is fine,and it helps with the pain.i have phlebotomies every 2 weeks,and dr. will start me on Hydrea next week.after a phleb i feel pretty good for a week or so,almost look forward to them ,lol.i am tired quite often,well i guess tired doedn't describe it. sometimes i go out to run errands,and right in the middle of them,my arms and legs start feeling so heavy i can't take another step,have to just get home and collapse.i am 58 yrs. old and also have insulin dependent diabetes.until 5 yrs. ago i was very healthy,or so i thought,lol.but you know God is good,and i find myself enjoying every day i live with more excitement.i too have a family i wouldn' want to leave, 3 children and 10 grandchildren,but i am making memories now. heres wishing all with this condition a happy blessed life,and live every day as if it were your last. Dawn hope to hear from you and i will let you know if i learn anything new.bye for now

Hi,RE: Polycythemia Vera
Hello To Every One. I have been looking for a location on the web, where I could write of my feelings, and also ask, questions from other's experincing the same type of Condition I have been diagnosised with. I hope this is the appropriate way to do so. If not, please feel free to let me know, so I can address them more appropriately.
First Let me, Introduce myself,abit. I am a 43 year old female, married, and live in Ontario, Canada.

I have worked in the medical field for most of my life, and do have a good understanding, when reading the information, on the topic. BUT ALTHOUGH I UNDERSTOOD I also experience other moments, when I can't recall, even the easiest of things. I HAVE HAVE MORE QUESTIONS THAN I CAN THINK !!! I am Angry and Confussed,& Fearful as to the Future..

What's happening to me, and what I loved as a Job, I have lost due to this Medical problem. This is the one thing that has scared and hurt me the most. MY IDENTIY AS A NURSE, HAS BEEN TAKEN AWAY, I HAVE LOST MY ABILITY TO REMAIN A CAREGIVER, TO THOSE WHO NEEDED HELP THE MOST. why me !!!!!!!!! The biggest LOSS of all is MY INDEPENDANCE SPECIFICALLY "my Driver's Licence. Being so dependant, prior to this, I have become a total hostage to my home. I must now rely on Family, Friends, Neighbours, to take me to appointments etc. I feel like I'm being a burden, although if the shoes were on the other's feet, I would be more than willing to pitch in and give all the help I could to those with a health related problem. Without question.

Been recently and finally diagnosised, I am in the stage, of denial I feel, although I have know myself, that something was not just rite,but, I could not put my finger on it exactly at that time. My diagnois, was caught accidently, after a bloodtest. The was ,my introduction to polycythemia vera. this diagnosis, came following a total collapse at work,(at first they thought I had a heartattack, which in the end was not the case.)
During this total collapse at work, I experienced a mental type of confussion, things I knew well, I could not recall, and as far as pain goes, it was overwhelming& Constant. !! in all extremities.

Can anyone tell me if they experienced any of these types of these experiences of overwhelming constant pain ?
Anyone with the same experience, persay. ??????

Also I have "periods" frequently of extreme fatique & confussion and the unablitiy to actually think or even speak on certian occassion, it was very scarery.

This did not happen all the time, buy when it did, it was so embarrasing.. Has anyone else felt or had these specific symptons & moments happen to you. How did you cope with themm. ??

What about other added symptoms, what types of added symptoms, have you experienced. For me, I now deal with ^ Blood Pressure Measurements. Contant Blood Testing has to be done, and will continue on forward, for the remainder of my life, just to keep an idea, on the levels within my blood.

Two main things cause me a great deal of embarrasement, only because they are so apparent and there is no way to hide the EXTREME REDNESS OF MY EARS... THEY ALMOST GLOW, LIKE A BURN.....this,& due to either other's concern or because other's belive I am embarrassed, or my feelings are hurt, they make a point of asking " What's the problem. I have not shared this with anyone except dear close friends, and family, I can trust completely.. Do you have any suggestions, which might help me deal with this particular part of the problem. I would like not to tell everyday acqaintances, I would prefer to keep this a bit more confidential.

Firstly, because of very small veins, it is hard to get any blood really to even to the test, it is a very painful procedure for me, my arms become totally black and blue. i MOST OFTEN HAVE TO WEAR LONG SLEEVE SHIRTS... Any suggestions, or idea's to handle this particular problem.?????/

I know I am not the only person who has this type of Disorder, but I would truely like to talk with those who too are dealing with this medical type situation. I would be interested in any advice or suggestions truely, to help me become a bit more become accustom, to living with Polycythemia Vera.

I am totally appreciated of the space this group has provided, for those to come forward and discuss eachs, medical condition, in a caring and confident manner. Thanks for providing me a way to soundoff, without having to do it thru, my family. I love my family so much, and do not wish to upset any of them, nor do I want them to treat me in a different manner than I am accustom, I want to continue to be the Wife, Mother, and the Daughter ..... God love them all, and thanks for the Wonderful Blessing, of Providing me with a Family, that loves me, as much as I love them. I hope that I will remain with you all for a long time to come.....
Thanks to all the new friends, who wish to respond, I will look forward to hearing from you all.

Sincerely,
Dawn Red Valentine.

------------------
[Dawn Red Valentine]
Hi,
Just read your post, my mother had poly.vera, her symtoms where her hand turned all red and itched terrible. We thought she had allergys, but that was not the case. She had testing and they found the poly. and they took 1 pint of blood from her every month, it really helped her it stopped the itching. She had to do it every month, it was the only thing that helped her. Talk to your dr/ and see if thinks it may help you. It is very terrible but I think having the blood drawn every month may help you.
best of luck
cookie

I am a 22 year old female. i just recently got diagnosed with Polycythemia Vera. I am the youngest my doctor has ever seen. It has gotten pretty bad apparently. He wants to put me on a drug called interferon. it is known to cause seriouse depression. I am hoping somebody can give me some feed back on this drug???????

I have PV and had it for several years. I have recently started getting shots of Interferon and the side effects tend to be unbearable, especially the itchtiness and burning sensation. Has anyone else experienced this and found a remedy that works for them? Thank You.

Hello everybody. I am new to the board but had a few questions and it looks as if you are all pretty knowledgable in the field of polychthemia.
I have been tested for everyting under the sun with in the last year. My major complaint has been feeling extremley lightheaded and dizzy. My hands and feet will feel extremley hot at times and my chins on my legs will itch terribly after bathing. I know these are all symptoms of polycythemia so I am quite concerened. My cardiologis did have me have a blood volume test done and this is what it says:

WHOLE BLOOD VOLUME IS CALCULATED AS 7507 ml. RED BLOOD CELL VOLUME IS CALCULATED AS 2928 ml. PLASMA VOLUME IS CALCULATED AS 4580 ml.

THESE VALUES ARE ELEVATED. NORMAL BLOOD VOLUME OBTAINED FROM A STANDARD TABLE FOR A PATIENT OF THIS WEIGHT AND HEIGHT IS APPROXIMATELY 4400 ml AND APPROXIMATELY THE SAME UTILIZING TABLES ADAPTED FROM DUBOIS AND RETZLAFF.

IMPRESSION;
WHOLE BLOOD VOLUME IS CALCULATED AT 7500 ml. WELL ABOVE THE PREDICTED NORMAL.

My cardiologist nurse called me back with the results and said dont worry about it - it was high but nothing to worry about. She then did tell me that this isnt a test they are real familiar with and they havn't done one before.

WHAT??? So, can you all give me any advice as to what I should do?
Should I be concerned or not?

Thanks a ton for any replies.

Wow what a lot of frightening messages. Maybe I have just been fortunate. For over 5 years my symptoms of dizziness, occassional blurred vision, itching, headaches, bouts of extreme tiredness, gout like symptoms in toes and eventually fingers-(this is evidently a real give away) etc were all attributed to "low grade" migraine and menopausal/hormonal symptoms (this was in UK) . Following 14 days straight of migraines 20 months ago, (following a very long plane flight) a blood test was taken and Polycythemia RV was immediately suspected. (here in the US) In fact one doctor said if I hadn't regularly taken a baby asprin every day(for the last 10 years) I could have been dead. My White cells were at 15(normal 4.8-10.8), my red cells at 7.44 (3.6-5.4) and my hemoglobin at 19.8(12-16)--my hemocrit (which I personally find the best indicator of how I feel) was 62.2!! (normal 37.0-47.0)--it was like trying to pump honey through my veins.

I immediately had 3 500mls(just over a pint) of blood removed over 8 days. This DID not cause any ill effects(amazing to see how slowly it came out the first round and how nicely it was flowing by the third time!) --I just had to make sure I drank ALOT to stay hydrated. also evidently there is some sort of marker if Polycythemia is likely to develop into Leukemia--it can be tested with either a bone marrow test or a genetic test---I was given the later (in NZ) and do not show that marker. My doctor says there IS still a 5% chance it may still develop into Leukemia but as he says there is a 95% chance it won't! My doctor also says the 12-15 year life expectancy that folk read about is referring to people that go untreated. My uncle was diagnoised almost 50 years ago and is still going strong! Since being diagnoised I have met many folk that have had this for decades!

I was told that iron must be cut back in my diet (it makes the bone marrow fire up) so I avoid all red meat and egg yolk (healthy for all kinds of reasons!). I discussed with my doctor taking this to an extreme--no more spinach salad!) but we agreed that in my case I would rather eat healthily and perhaps have to give an extra pint of blood every year. Evidently vit C can also cause increase in bone marrow production so I cut out c tablets. smoking a no no. remember you want to keep the blood as oxygenated as possible so I also take fish oil tablets. I take a baby asprin every day, I take hydroxyurea now only 4x a week --cut back to the least amount to keep my platelets in check(I had NO side effects even when taking it every day--but then I didn't know I should have!) I have my blood tested every 4-6 weeks and have a plebotomy as required--about every 3 months--I now seem more aware of symptoms--once my hematocrit gets to about 52 I can sense it--for me that seems to be the uncomfortable level (definitely healthier that the 62.2 I had at diagnosis) after which I fall into high normal range--and as my doctor says, we don't need perfect. My platelets can still jump about but never to the extremes of originally.

I have no medical insurance (!) so here in the US I pay $90 to give 500 ml. (yes it was free in NZ) My doctor sees me every three months, he is thrilled at my success and he is always positive. I certainly eat more healthly than I use to! And I quit smoking--so i am probably better off than I would have been before reforming diet and smoking--without PRV! still drink alcohol (but a glass of water to match every drink) and am very careful when I fly--take a full asprin day before,of, and after flight, drink a small bottle of water every hour on the plane and get up and exercise. My doctors have all been so positive that I must admit I am not fearful and feel tht I am taking positive steps to manage my illness. I fully expect to be here for several more decades. hope this is of some help . would enjoy any other info any of you have to share. Pity they can't use our blood---my doc says we need to find someone with a rose garden--all that iron rich blood would be a real treat for them!

hi everyone, im 17 and have had polcythemia rubra vera since i was about 15 , so far ive had numerouse blood tests , confused lots of dr's, and about 15 phlebotomies in 4 months but i try not to think about it, i do things to keep my mind occupied, because the way i see it there no cure for this horrbile thing i will have it till the day i pass on , sadly you cannot control the physical aspects of it but you can control the mental aspects, think of happy things such as family friends, it helps , because the more you think about it the sadder you get, the sadder you get the more you miss out on in life, and then it truely has won,no diease no person no anything should take away the one thing you can control and that is your memories youve made, the people youve met the places youve gone , and your hapiness, though as sad and heart breaking as it is , its not going to get better its going to take you to change the outlook on it :angel: i wish everyone out there the best of luck , and keep your chin up! take everyday one step at a time, i love to tell jokes and laugh and make people laugh and we all get to laughing and haveing a good time and for that moment, that second, or that day,polycythemia rubra vera is not there , all i ahve is the fun and memories created :angel: , im not sayning forget c ompletley because you cant, im just saying when you can wethere it be for a moment or an few minutes or days , try not to ;)
have a good day
drummajor

Dear Dawn,i can feel your pain.not just physically but emotionally.i too have been experiencing similar problems.i was dx'ed just two mos. ago,and have a lot of questions about the condition,what to expect in the future,etc.as i reflect back i realize i have probably had Pv for some years. i am always profusely sweating,even in winter,face is beet red a lot.my fingers and feet hurt a lot,sometimes when unbearable i will take ultram,which my hemo dr. says is fine,and it helps with the pain.i have phlebotomies every 2 weeks,and dr. will start me on Hydrea next week.after a phleb i feel pretty good for a week or so,almost look forward to them ,lol.i am tired quite often,well i guess tired doedn't describe it. sometimes i go out to run errands,and right in the middle of them,my arms and legs start feeling so heavy i can't take another step,have to just get home and collapse.i am 58 yrs. old and also have insulin dependent diabetes.until 5 yrs. ago i was very healthy,or so i thought,lol.but you know God is good,and i find myself enjoying every day i live with more excitement.i too have a family i wouldn' want to leave, 3 children and 10 grandchildren,but i am making memories now. heres wishing all with this condition a happy blessed life,and live every day as if it were your last. Dawn hope to hear from you and i will let you know if i learn anything new.bye for now

hello, fellow pv people. without reading all the posts i'd like to ask a question but first the reason why. reading all the sites on pv it is apparent that because it is rare and not affecting a multitude, no real studies and cures are going to be around til who knows when. just phlebotomies and a handful of drugs which don't sound scary. down the road things could get ugly, sooooooooo what has anyone heard about homeopathic methods, herbs any alternatives including voodoo. i mean look at acupuncture, accupressure etc. anyone?

i have heard of this disease because my 32 year old daughter was diagnosed with it a year ago, she went 5 months with good blood count then it went bad and she had to do the infusion last time was ok too she is just on something for her heart cause she developed a rapid heart rate and depression i do know stress is important in handling this rare illness i know it is odd cause it is usually found in males and or asian or jewish descent, she is none of the above, she is native american i just wanted you to know you are not alone out there im sure more will answer but if not i will talk to youl God bless and keep your spirits up... very important

I have just been reading the messages posted and am heartened with the attitudes I find. I have been scared out of my mind (Hashimotos?) about my recent diagnosis of pv and overwhelmed with the amount of medical information gathered from MPD homepage. Wonderful to find some people with a "slant on handling it all".
I look forward to reading more and perhaps I can get to a stage when I am able to help someone else;) (sigh)
Anyone from Australia on this board?

I am a 22 year old female. i just recently got diagnosed with Polycythemia Vera. I am the youngest my doctor has ever seen. It has gotten pretty bad apparently. He wants to put me on a drug called interferon. it is known to cause seriouse depression. I am hoping somebody can give me some feed back on this drug???????

Have you tried the MPD homepage? There is a lot of information on drugs, old and new, lots of feedback info on Hydroxeurea (spelling?)
Hope this helps
Linda:)

Hi there

Im 36 and recently diagnosed with PV, I have so many questions buzzing round - obviously the first thing was to look up as much info as poss and the see what the life expectancy was, keep reading that 10-20 years with treatment but then also reading that this info is out of date ?? but the way I see it there are no guarantess even ith treatment that there wont be any clots etc

Im on Intron A for my platelets which were at 1.5 million, they are now at about 700

Had my first blood let a couple of weeks ago

back with the specialist next month

Its early days for me and Im still trying to get my head round it - and wondering if in time I will start to feel better ? I have a headache most days and feel very light headed, this seems common ?

also ache all over (which could also be due to the intron injections) and have had swelling in my fingers ( anyone else had this problem ? )

Ive also had a few spots/blisters come up on my face and back - kind of liek acne - could this also be connected ?

Since being diagnosed I worry every little thing is connected and if it is going to lead to other complications

hi folks,
wow i didnt realize so many others have this. when my symptoms first appeared they showed up as chest pains. i was apack a day guy, went in for all the heart tests, angiograms, echo cardiograms the whole nine yards. after doing this 3 times in as many years, difeerent stuff started happening. i would wake in the middle of the night with severe leg cramps, would sweat profusely even in the winter, shortness of breath. finallly saw an oncologist and he figured it out. my rbc was over 5000! now i see the ******* about every 4 weeks, but on average they take a pint every 6, trying to maintain the rbc at 4100.
what really makes me mad is they throw the blood away! i dont understand why they cant filter it and use it for something, even if only for research!
i tease the doc that i should just buy some leeches, i would save my insurance carrier hundreds of bucks!

Wow, I just finished reading every single post as I just discovered this site. I am a 51 year old female and was just diagnosed with this the end of February. I was pretty much asymptomatic except I kept getting "palpitations" which I now attribute to the blood being so thick I could feel it pumping through my veins. I am so thankful it was diagnosed and am trying to ignore what I have as I have a tendency to stress over many small things and this appears to be a big thing!
Apparently I have the JAK2 mutation, but I am not sure what that might mean down the road other than it means I definitly have polycythemia vera and not the other two forms,...anyone out there familiar with that gene mutation?

I was diagnosed recently and the doctor wants me on hydrea but I am scared of the drug --- I would rather do the bloodletting - but you say you had no ill effects? I suffer from dizziness, chest pain and shortness of breath and headaches. Also my blood tests had been confounding my primary physician for years. They couldn't understand why it was high and stayed higher than normal on my white and red blood counts. I am anxious to hear anything you all have to say.

[QUOTE=balckbeauty;2329789]Hello everybody. I am new to the board but had a few questions and it looks as if you are all pretty knowledgable in the field of polychthemia.
I have been tested for everyting under the sun with in the last year. My major complaint has been feeling extremley lightheaded and dizzy. My hands and feet will feel extremley hot at times and my chins on my legs will itch terribly after bathing. I know these are all symptoms of polycythemia so I am quite concerened. My cardiologis did have me have a blood volume test done and this is what it says:

WHOLE BLOOD VOLUME IS CALCULATED AS 7507 ml. RED BLOOD CELL VOLUME IS CALCULATED AS 2928 ml. PLASMA VOLUME IS CALCULATED AS 4580 ml.

THESE VALUES ARE ELEVATED. NORMAL BLOOD VOLUME OBTAINED FROM A STANDARD TABLE FOR A PATIENT OF THIS WEIGHT AND HEIGHT IS APPROXIMATELY 4400 ml AND APPROXIMATELY THE SAME UTILIZING TABLES ADAPTED FROM DUBOIS AND RETZLAFF.

IMPRESSION;
WHOLE BLOOD VOLUME IS CALCULATED AT 7500 ml. WELL ABOVE THE PREDICTED NORMAL.

My cardiologist nurse called me back with the results and said dont worry about it - it was high but nothing to worry about. She then did tell me that this isnt a test they are real familiar with and they havn't done one before.

WHAT??? So, can you all give me any advice as to what I should do?
Should I be concerned or not?

Thanks a ton for any replies.


Go see a hemotologist/onocologist - primary care physician's dont' understand this disorder - I was misdiagnosed for years]

[QUOTE=NASCARfan;807008]Hi Gine, Do you have Polycythemia. Do you know others that have it. I see you have talked to people who have beat this for 20 years. They why does the Dr say the survival with treatment is 9--11 years?? I am going for more phlebotomies next week 500ml every 3 weeks and she wants to put me on Hydrea which tells the bone marrow to stop producing and try to bring my platelet count down to norm. It is at 704 right now. Any information that you have about Polycythemia would be greatly appreciated. My husband and I are a total wreck over this. I think I have shocked my body because I am very weak and tired all the time and very lazy since they told me I had Polycythemia[

NASCAR - same boat, my hemotologist/onocologist wants to put me on Hydrea and I'm scared about it_ I think I would rather do the bloodletting than put that in my body - but I have been having the dizzyness, chest pain, and extreme fatigue for awhile so am anxious to do something.]

[QUOTE=DeskMom;152550]I am a 68 year old woman and was diagnosed with polycythemia vera in May. I have had 5 blood withdrawals now, and while I am feeling better I still have a lot of pain in my legs. Aching like I have the flu, and leg cramping as well. My itching of legs after a shower got better, and is now back. My face was very red, and is now better. The hemotologist has just prescribed hydroxyurea for me. Well I have not taken any of it yet(sent off to insurance and just recieved the medecine yesterday) My concern is taking this medication. There are so many side effects, and I am wondering why the hemotogolist did not discuss this with me. What the medecine is expected to do to help me and explain what the side effects are. It is really scarry to me to take a chemo medication. It is also related to earlier events of lukemia.
My counts have been as follows
RBC - from 5.67 down to 4.97
WBC - from 17.1 up to 22.8
platelett - from 543 up to 593
After the 5 phlebotomy's true the red cell count is down, but my symptoms are coming back after a brief relief.
It just seems like the doctors just don't know what to do with us that have this disease. It's like wait until you have the blood clot, or the stroke, or the heart attack, and we know what to do about your treatment, but now we just don't know what to do with this disease.
Any advice from anyone. could use some advice

[QUOTE=grumpyme;2876709]hi folks,
wow i didnt realize so many others have this. when my symptoms first appeared they showed up as chest pains. i was apack a day guy, went in for all the heart tests, angiograms, echo cardiograms the whole nine yards. after doing this 3 times in as many years, difeerent stuff started happening. i would wake in the middle of the night with severe leg cramps, would sweat profusely even in the winter, shortness of breath. finallly saw an oncologist and he figured it out. my rbc was over 5000! now i see the ******* about every 4 weeks, but on average they take a pint every 6, trying to maintain the rbc at 4100.
what really makes me mad is they throw the blood away! i dont understand why they cant filter it and use it for something, even if only for research!
i tease the doc that i should just buy some leeches, i would save my insurance carrier hundreds of bucks



Did the treatmenht make your shortness of breath better?

[QUOTE=linbauhi;2407188]Wow what a lot of frightening messages. Maybe I have just been fortunate. For over 5 years my symptoms of dizziness, occassional blurred vision, itching, headaches, bouts of extreme tiredness, gout like symptoms in toes and eventually fingers-(this is evidently a real give away) etc were all attributed to "low grade" migraine and menopausal/hormonal symptoms (this was in UK) . Following 14 days straight of migraines 20 months ago, (following a very long plane flight) a blood test was taken and Polycythemia RV was immediately suspected. (here in the US) In fact one doctor said if I hadn't regularly taken a baby asprin every day(for the last 10 years) I could have been dead. My White cells were at 15(normal 4.8-10.8), my red cells at 7.44 (3.6-5.4) and my hemoglobin at 19.8(12-16)--my hemocrit (which I personally find the best indicator of how I feel) was 62.2!! (normal 37.0-47.0)--it was like trying to pump honey through my veins.

I immediately had 3 500mls(just over a pint) of blood removed over 8 days. This DID not cause any ill effects(amazing to see how slowly it came out the first round and how nicely it was flowing by the third time!) --I just had to make sure I drank ALOT to stay hydrated. also evidently there is some sort of marker if Polycythemia is likely to develop into Leukemia--it can be tested with either a bone marrow test or a genetic test---I was given the later (in NZ) and do not show that marker. My doctor says there IS still a 5% chance it may still develop into Leukemia but as he says there is a 95% chance it won't! My doctor also says the 12-15 year life expectancy that folk read about is referring to people that go untreated. My uncle was diagnoised almost 50 years ago and is still going strong! Since being diagnoised I have met many folk that have had this for decades!

I was told that iron must be cut back in my diet (it makes the bone marrow fire up) so I avoid all red meat and egg yolk (healthy for all kinds of reasons!). I discussed with my doctor taking this to an extreme--no more spinach salad!) but we agreed that in my case I would rather eat healthily and perhaps have to give an extra pint of blood every year. Evidently vit C can also cause increase in bone marrow production so I cut out c tablets. smoking a no no. remember you want to keep the blood as oxygenated as possible so I also take fish oil tablets. I take a baby asprin every day, I take hydroxyurea now only 4x a week --cut back to the least amount to keep my platelets in check(I had NO side effects even when taking it every day--but then I didn't know I should have!) I have my blood tested every 4-6 weeks and have a plebotomy as required--about every 3 months--I now seem more aware of symptoms--once my hematocrit gets to about 52 I can sense it--for me that seems to be the uncomfortable level (definitely healthier that the 62.2 I had at diagnosis) after which I fall into high normal range--and as my doctor says, we don't need perfect. My platelets can still jump about but never to the extremes of originally.

I have no medical insurance (!) so here in the US I pay $90 to give 500 ml. (yes it was free in NZ) My doctor sees me every three months, he is thrilled at my success and he is always positive. I certainly eat more healthly than I use to! And I quit smoking--so i am probably better off than I would have been before reforming diet and smoking--without PRV! still drink alcohol (but a glass of water to match every drink) and am very careful when I fly--take a full asprin day before,of, and after flight, drink a small bottle of water every hour on the plane and get up and exercise. My doctors have all been so positive that I must admit I am not fearful and feel tht I am taking positive steps to manage my illness. I fully expect to be here for several more decades. hope this is of some help . would enjoy any other info any of you have to share. Pity they can't use our blood---my doc says we need to find someone with a rose garden--all that iron rich blood would be a real treat for them

Hi - did the hydrea or bloodletting ease your symptoms? Shortness of breath, dizzyness, fatigue? So, you didn't have any symptoms from taking hydrea? What dosage were you on?

definitely go see a hematologist, and he will do the appropriate tests to determine if you have PV and which type it is!!

Have you tried the MPD homepage? There is a lot of information on drugs, old and new, lots of feedback info on Hydroxeurea (spelling?)
Hope this helps
Linda:)

I was also diagnosed at 26 with P-Vera, and phlebotomies worked better for me than anything for several years. My hematologist preferred using any chemo type drugs, (Interferon sp?, Hydroxeurea, etc) as a last resort due to the side effects. Just something to keep in mind. Good luck. This is a very rare and difficult disease or disorder, and it seems like some of the by products of it are endless. Take care, and listen to your body...it knows when something is wrong and the doctors need to know. Jim :)

Hi JIm/Linda -Yes I have checked out the MPD website and it is very good. A lot of very good info and I've gotten a lot of emails from the members.

Hello,
It could be worse.