Just Been Told I Have Polycythemia Rubra Vera Is Any One Else Using This Board Suffering From The Same Blood Disorder Would Like To Talk To You About It And How You Are Affected I Am Finding The Itch At The Moment Driving Me Mad
The following user gives a hug of support to paula23: bliss01 (06-25-2011)
I was told in passing by my endocrinologist that I have it and that I should have blood taken but was neven given any more info on it. I do have rib pain on the left side, night sweats, pain in the hands and feet, high blood pressure and on and on. I left that doctor for other reasons and my current doc looks at me like I am nuts. Can we get you guys to list off some symptoms?
Hello, I would like to suggest you check out this website. I believe it will answer many of your questions. Hope it helps.[url]http://www.mpdfoundation.org/[/url]
I was told in passing by my endocrinologist that I have it and that I should have blood taken but was neven given any more info on it. I do have rib pain on the left side, night sweats, pain in the hands and feet, high blood pressure and on and on. I left that doctor for other reasons and my current doc looks at me like I am nuts. Can we get you guys to list off some symptoms?
Hi, my name is Randall and I was diagnosed with polycythemia in 2000 (total blood cell count over one million) and had symptoms dating back to 1994. It started with itching on the inside of my lower arms, itching from my knees to my ankles (terrible itch for about 45 minutes) after hot shower, red in the face like a sun burn, tightness across my chess and pain behind my breast bone ( two stays in hospital thought I was having heart attack), extreme fatigue feeling, night sweats and lots of anxiety! After I started seeing my hematologist and sveral plebotomies and the right medications (agralide, hydroxurea, and 81 mg aspirin and benadryl for the itching) I have fewer symptoms. Now I hurt in my joints (elbows, knees, and balls of feet, still have a few night sweats and blood pressure a little high. I see my hematologist every two months now and he says I have many good years ahead and my current age is 60. Good Luck & God Bless
Hi, Well I have found the worse part of having polycythemia is the night sweats, some nights I have to get up and change the bed 2 - 3 times and take a shower. I also have the sweats other times of the day too. I only have the itching thing after a hot shower once in a while.
The one thing I do see is that these doctors know about polycythemia but they seem to have no idea what to do about it or tell you much about it, only that you have it and they want to drain a pint of blood out of you every week.
I found out more info on the internet about it than the doctors could tell me, what does that tell you about my doctors.????????
I know I am looking for another doctor to look at me and treat me.
The veterans administration are real bone heads when it comes to getting treatment for something they know little about.
For what it is worth, if you don't like the answers you are getting out of your doctor you should find one that knows what he or she is talking about.
Just Been Told I Have Polycythemia Rubra Vera Is Any One Else Using This Board Suffering From The Same Blood Disorder Would Like To Talk To You About It And How You Are Affected I Am Finding The Itch At The Moment Driving Me Mad
I have the same thing...was just diagnosed in Nov. 2009. I had been having the terrible itch on my arms and across my chest which occurred mostly after a bath or shower. I began to think I was allergic to water! This went on for a couple of years before I was diagnosed. Also I had terribly bloodshot eyes that my opthamologist said was "ocular rosasea". Those were my only two symptoms other than my constant fatigue. (I thought the fatigue was due to my age and being a school teacher!)
Right now my blood is being monitored at regular intervals, and I get a phlebotomy when my blood count gets too high. I also take a baby aspirin once a day. Other than that, my life goes on as normal.
How old are you? Are you seeing a hematologist?
Plynn
Hi Paula! My name is Randy; I'm 61 years young and was diagnosed with PV in 2000 with symptoms dating back to 1994. The terrible itching in my fore arms and lower legs after a hot shower is what led my family doctor to do some blood work and that resulted in some very high blood counts reported. I went through several phlebotomies and now take hydroxurea, agrylide' and 81 mg aspirin every day. I take two benedryl's every night at bed time which helps with the itching and helps induce sleep. THe worst part of this disorder/disease for me is the extreme fatigue.
Best wishes Paula and Good LUCK!! May God be with you.
Randy
I have the same thing...was just diagnosed in Nov. 2009. I had been having the terrible itch on my arms and across my chest which occurred mostly after a bath or shower. I began to think I was allergic to water! This went on for a couple of years before I was diagnosed. Also I had terribly bloodshot eyes that my opthamologist said was "ocular rosasea". Those were my only two symptoms other than my constant fatigue. (I thought the fatigue was due to my age and being a school teacher!)
Right now my blood is being monitored at regular intervals, and I get a phlebotomy when my blood count gets too high. I also take a baby aspirin once a day. Other than that, my life goes on as normal.
How old are you? Are you seeing a hematologist?
Plynn
Hi, My name is Dave and I am 52 years old. I was just diagnosed with it about a month ago after having a series of pain shots in my lower back to try and control the pain I have been having for years and the pain has gotten 100 times worse over the past 3 years. They found the Polycythemia just doing regular blood tests after I started sweating heavy almost all the time and even worse at night when i am trying to sleep. The itching part has only been mild so far but from what I have read i should get it worse like everyone has it.
The Hematologist I see thru the Veterans Administration is not the sharpest person in the world for a doctor I think and does not info me too well. I have had to go see another doctor just to keep tabs on the other jerk. So far they have been taking a pint of blood a week right now and they told me if they need to they will go to 2 pint a week. I have not seen the new numbers of the latest blood tests as of yet. I have just started having problems with my eyes, they are dry and I look like I have not had any sleep in days. I retired a few years ago so I guess these doctors think I have nothing better to do with my time than to run back & forth to see them and help pay for a new car or something else for them, I was going to go down to Ayacucho, Peru in May to do some work for the INC Museum there but now the doctors say it would be a bad idea for me to go there and spend 3 weeks up in the mountains. They say my body would make more red blood cells up in the mountains and I should put the work off up there for 6 months or more till I have this problem regulated better.
It just seems like every time I go to the doctors there is something else wrong they have to try and fix ??????? I know this, I am not going to stop living my life just to run to the doctors 2 - 3 times a week, that's not going to happen with me. I'll draw the blood myself and send it out to be tested and stick myself to drain a pint of blood a few time a week at home and live my life the way I want to.
I hope things get better for you real soon and all the side effects to this thing ease up for you
Dave
Dave,
You sound like a fiesty one! What area geographically speaking do you live? Yes, your first line of action is to get your blood regulated. You don't want to be off somewhere and have a stroke or a heart attack!
Every time I go to the hematologist, I request a copy of my blood counts from that visit.
I have a table of the norms, and I compare my counts with that table every time I go.
I started with phlebotomies every two weeks, then started going once a month, and now I'm going every two months. My hemo said he'd like to get me down to going maybe every 6 months!
I, too, had trouble with my eyes. They stayed so bloodshot and dry, that people thought I'd been out drinking or taking drugs! After my blood got regulated, the bloodshot eyes went away.
This is a condition that can be managed, but will need constant monitoring for the rest of our lives..
Plynn
Dave,
You sound like a fiesty one! What area geographically speaking do you live? Yes, your first line of action is to get your blood regulated. You don't want to be off somewhere and have a stroke or a heart attack!
Every time I go to the hematologist, I request a copy of my blood counts from that visit.
I have a table of the norms, and I compare my counts with that table every time I go.
I started with phlebotomies every two weeks, then started going once a month, and now I'm going every two months. My hemo said he'd like to get me down to going maybe every 6 months!
I, too, had trouble with my eyes. They stayed so bloodshot and dry, that people thought I'd been out drinking or taking drugs! After my blood got regulated, the bloodshot eyes went away.
This is a condition that can be managed, but will need constant monitoring for the rest of our lives..
Plynn
Hi my name is paula I was diagnosed in 2007 I have been doing ok for the last while the doctors have regulated my blood and my count is normal at the minute although I am due back to see the doctor in two weeks and I feel I may need to have some blood taken I feel the symptoms are starting to appear unfortunately this is for the rest of my life and is something I will have to get used to I hate having the blood taken my arms get very sore afterwards how about you how often do you have your blood taken
Hi my name is paula I was diagnosed in 2007 I have been doing ok for the last while the doctors have regulated my blood and my count is normal at the minute although I am due back to see the doctor in two weeks and I feel I may need to have some blood taken I feel the symptoms are starting to appear unfortunately this is for the rest of my life and is something I will have to get used to I hate having the blood taken my arms get very sore afterwards how about you how often do you have your blood taken
Hi Paula!My name is Randy and I am 61 years young and was diagnosed with PV in 2000.Once UR Hem gets handle on controlling UR PV U may not have to have blood taken off so often.I went 3 years without a phlebotomy.This disorder is so very unpredictable.I went to my Hem the 1st of March and I was anemic.All my counts were low and hematicrit was 37.He took me off my regular meds and have been on prenizone since.I was back to see him yesterday and he cut back on the prednizone and started me back on one of my regular meds.So;anyway I'm feeling better and have more enrgy than I have had in a while.Good luck Paula and God be with U!!!!Randy
Hey Randy!
I'm glad you posted on how you were doing. Sorry to hear you are anemic, but you have a good hematologist who seems to be on top of things. Glad to hear you are having more energy now. When is the last time you had a BM biobsy? How do things look there?
I'm still on phlebs and aspirin only...My counts seem to be leveling off in the normal range right now and the doc said that I didn't have to come for another cbc/ possible phleb. for 2 months... My next appt. is April 13....Don't know what the numbers will say then, but I have been symptom free...so far. At first, when I was getting phlebs every two weeks, my platelets shot up, but not having so many "blood-lettings" has helped... and my platelets are under 600. (That seems to be were he wants them to be.) He said that at my age, anything over 600 was cause for concern.
Well, Randy, hope you continue to feel better...Take care and God Bless.
Plynn
Hey Randy!
I'm glad you posted on how you were doing. Sorry to hear you are anemic, but you have a good hematologist who seems to be on top of things. Glad to hear you are having more energy now. When is the last time you had a BM biobsy? How do things look there?
I'm still on phlebs and aspirin only...My counts seem to be leveling off in the normal range right now and the doc said that I didn't have to come for another cbc/ possible phleb. for 2 months... My next appt. is April 13....Don't know what the numbers will say then, but I have been symptom free...so far. At first, when I was getting phlebs every two weeks, my platelets shot up, but not having so many "blood-lettings" has helped... and my platelets are under 600. (That seems to be were he wants them to be.) He said that at my age, anything over 600 was cause for concern.
Well, Randy, hope you continue to feel better...Take care and God Bless.
Plynn
Hi Plynn! Thanks for the kind words. I'm seeing my hem every two weeks now until we can get my counts and meds leveled out. I have only had the one bone marrow biopsy and that was in March of 2000. "GREAT" hearing UR counts are running good! M y prayers R with U. I haven't posted a lot lately; but, do check the posts fairly regular.
Hi to Bren, Karen, Paula, and all the other PV folks out there! UR all in my thoughts and prayers. Best wishes and "Good Health" to all.
God Bless All;
Randy
Randy,
I went to the hematologist today, and after two months of not having a phleb, I thought I would definitely need one today...but to my surprise, he said according to my counts, he would not be ordering a phleb today! So he made me an appt. in two more months! That will be 4 months without a phlebotomy!! My HGB is down to 15...from almost 20 when I was diagnosed! He is watching my platelets, though....they are at 590...too close to the 600 limit. He mentioned the possibility of Hydroxyurea or Agrylin if/when those platelets start acting up.
I told him we would discuss that when the time came.
Hope this note finds you feeling well and keeping those numbers under control!
Take care, and God Bless.
Plynn
Hi, Dave! This is a rare disease so many docs see 1 or 2 cases a year and, as you've probably figured out, there's no typical case. So even good docs can be a bit clueless and it helps if you can supplement it with internet reserach and learn from the experiences of others.
My DH, age 71, was diagnosed with PV around 2004 although he'd been having itching/sweating problems for a couple of years before that. He had phlebs once a week for awhile to get his red cell counts down and is now down to going every 2-3 months. You need to experiment with what helps the itching- some OTC antihistamines worked and in his case, very hot showers can stop an itching attack if he waits till the attack hits the really bad stage. For awhile he was taking showers only every few days because normal-temp showers brought on itching attacks.
A couple of years ago the itching wasn't being well-controlled by any of the above and he started on hydroxyurea. So far, so good. He's semi-retired but we go to Europe at least once a year and last year we were kayaking around the city walls of Dubrovnik- beautiful! We're going to Spain next month if the volcano in Iceland stops spewing the European airspace. So, life goes on. There are many ways to manage it. High altitude can make it worse, so I can see why your doctor would want you to get stabilized first.
Hi, Dave! This is a rare disease so many docs see 1 or 2 cases a year and, as you've probably figured out, there's no typical case. So even good docs can be a bit clueless and it helps if you can supplement it with internet reserach and learn from the experiences of others.
My DH, age 71, was diagnosed with PV around 2004 although he'd been having itching/sweating problems for a couple of years before that. He had phlebs once a week for awhile to get his red cell counts down and is now down to going every 2-3 months. You need to experiment with what helps the itching- some OTC antihistamines worked and in his case, very hot showers can stop an itching attack if he waits till the attack hits the really bad stage. For awhile he was taking showers only every few days because normal-temp showers brought on itching attacks.
A couple of years ago the itching wasn't being well-controlled by any of the above and he started on hydroxyurea. So far, so good. He's semi-retired but we go to Europe at least once a year and last year we were kayaking around the city walls of Dubrovnik- beautiful! We're going to Spain next month if the volcano in Iceland stops spewing the European airspace. So, life goes on. There are many ways to manage it. High altitude can make it worse, so I can see why your doctor would want you to get stabilized first.
Hi, Well this stuff could screw-up my plans for months to come if these Veterans Administration doctors don't move a lot quicker than they have so far.
I was force to retire almost 2 years ago by the Veterans Admin. and the Air Force and so far they still do not have my pension right and I do not see things getting worked out ant time soon. I do some work in Peru for some of the
Countries INC's Museums doing Forensic Facial Reconstructions of skulls that are dug up from different sights in Peru. My Forensic Reconstructions are being displayed in a bunch of Peru's best Museums and it is very very important for me to get these things done on time and make sure they are displayed properly.
So far I have been put behind about 3 months, I had plans to go to Peru in the next few weeks and do some work but it looks like I have to cancel my plans, boy what a mess this is going to turn into.
Boy now I know what everyone is talking about the bad itching, well I started to get it last week on my back and face. It just keeps getting better, both of my eyes are so bloodshot I can not drive and I have to get my wife to drive me where I need to go. All thought the worse part is that the headaches I am getting, they are so bad it is like someone taking a baseball bat to the back of my head and nothing I take will help. If I sit still and do not move my head it is not too bad but as soon as I turn my head the pain just about knocks the wind out of my sails, nothing seems to work to help the headaches at all.
I know if I travel to Peru that I have a bunch of work to do up higher in the mountains and that could screw things up even more and could cause more damage that I have already by making a lot more red blood cells when I am up there, but I wonder if I give up 3 or 4 pints of blood while I am there if that will help off set the problems ????? I can do that myself
Hi Paula!My name is Randy and I am 61 years young and was diagnosed with PV in 2000.Once UR Hem gets handle on controlling UR PV U may not have to have blood taken off so often.I went 3 years without a phlebotomy.This disorder is so very unpredictable.I went to my Hem the 1st of March and I was anemic.All my counts were low and hematicrit was 37.He took me off my regular meds and have been on prenizone since.I was back to see him yesterday and he cut back on the prednizone and started me back on one of my regular meds.So;anyway I'm feeling better and have more enrgy than I have had in a while.Good luck Paula and God be with U!!!!
Randy
