POZ Community Forums
Main Forums => Living With HIV => Topic started by: weasel on October 03, 2012, 09:31:20 pm
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Polycythemia vera , I have been told I have this !!!!!!
Source :
Federal University of Paraná, Curitiba, Brazil.
Abstract
It has been suggested that HIV plays a role in the generation of myeloproliferative disorders, including polycythemia vera (PV). Seven cases of polycythemia in HIV patients have been described in the literature, but only 3 of these met criteria for determining a primary origin (vera) of polycythemia. We report a case of PV in a patient infected with HIV. A 45 year old non-smoking homosexual male presented with 15.7 g/dl hemoglobin in 1991, and was diagnosed with HIV. After 7 years, he presented with plethora, splenomegaly, an erythrocyte mass of 71 ml/kg, and an oxygen saturation of 93.9% (the latter three constituting the major criteria for the diagnosis of PV). Erythrocytes 7.35 x 10(6)/ml hemoglobin, 21.4 g/dl, hematocrit 63%, leukocytes 12,400, erythropoietin < 5 nmoll/ml. These values are all compatible with a diagnosis of PV. The CD4 count was 321 cells/mm(3) and HIV viral load was undetectable. The patient was initially treated with zidovudine. He was then treated with didanosine, lamivudine, and saquinavir, but all of them failed to slow the increase in erythrocyte levels. After a diagnosis of PV, he was treated with hydroxyurea and phlebotomy, which normalized the hemogram. CD4 count rose to 474 cells/mm(3) and HIV viral load remained at undetectable levels. The patient remains in stable condition with combination treatment after 1 year. We suggest that this is a case of HIV infection which may have led to the emergence of polycythemia vera. Treatment of the HIV did not prevent the appearance of the myeloproliferative disorder.
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Hey Weasel,
What has your doctor said to you? What is your prognosis in his/her view?
An abstract doesn't tell me/us what you've been told.
Did you receive this diagnosis today?
Thanks
Em
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This is a trustworthy source--the NIH. Please read this particularly with regard to treatment, outcome, complications, etc.
See if this information helps. I remain curious what your healthcare provider has told you and what care regimen they outlined for you.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001615/
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Hi emeraldize,
I have several issues .
Itchiness , drives me nutz !
Breathing : my o2 level is 91 !!!!!
I do not smoke !!!!! I was a light smoker , quit over 30 years ago .
I have a few other issues going on .
The tumor on my finger concerns me !!!!!
My liver is killing me !
I have acute gout .
The blood tests ALARMED HER ! and I must say me too
Carl
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Carl,
sorry you are having to deal with this!
What did you doctor say were next steps? Generally, PV is easily treatable and phlebotomy should relieve your symptoms. It doesn't cure it, but like ARVs and HIV it can help you manage the disease.
Like any diagnosis -- it's important to work through the fear and, I find the best thing for that is to talk about your fears. Ask your doctor questions and learn what you can.
Also -- use us to help get your fears out.
Hugs,
Mike
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Hi Carl,
While I always appreciate candor from a doc, if all you've walked away with is the residue of her being alarmed, then you need more info from her.
Between the NIH link and what Mike has shared, either with her nurse, or a PA-C, or her directly, you deserve more input.
Being stressed isn't going to help -- but you know that. If you're able to, please call her office tomorrow.
Em
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I am sorry as well that you're having to deal with this. I had only basic info about this condition before. So, is this the result of a gene mutation, as the NIH link says? The NIH link was informative. I had very basic knowledge before reading that.
Wishing you all the best with this.
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This is a trustworthy source--the NIH. Please read this particularly with regard to treatment, outcome, complications, etc.
See if this information helps. I remain curious what your healthcare provider has told you and what care regimen they outlined for you.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001615/
Thank you Em ,
This is a good write up . Now I am more confused ! I was told an MRI or CAT SCAN was needed . The main concern was that I have a tumor somewhere . I do have a tumor on my finger that they do not seem to care about ?
I will get more information .
Access to the clinic is Tuesday and Wednesday 1 pm to 4 pm . So it will be next week before I can get more info.
After reading this link , I have many questions . Yes walking away with her ALARMED is unsettling to say the least .
Thanks all ,
Carl
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Hi Carl , I haven't any useful information to offer except to wish you well and send some calming energy your way ... that's worth a little bit isn't it ?
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I was told an MRI or CAT SCAN was needed . The main concern was that I have a tumor somewhere . I do have a tumor on my finger that they do not seem to care about ?
Hey Carl,
I'm sure they just want to do an MRI or CAT scan to make sure nothing else is going on. Once you have it done, usually the results will come quickly. Try to not worry too much in the meantime.. speculation will drive you crazy. I'm sorry you are going through this. Stay strong.
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Thank you jg1962 & HnyMustard :-*
I am a little less concerned today ... May or not be a good thing ?
What I have been reading states I need to " Let Blood " ? WHAT !
Then I need to walk and do psychical stuff !
Time to drag out the bicycle and fluff up the tires .
I do have some issues I have been ignoring . If you can't fix things then why
start poking around !
Hugs from Weasel ;)
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Hey Carl, I've never heard of this condition but just wanted you to know I'm thinking about you and sending good thoughts your way. Hang in there buddy
-Will
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Hi Carl
I have little to offer of advice except positive thoughts and energy your way. I hope by your next visit, you will receive more information about the care you need and I hope everything will be okay with you.
Hugs to you
Karry
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Oh bollocks Carl I am sorry you are going this, anyway good thoughts to you no
THE BEST OF THE BEST TO YOU.
keep us posted
m
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Hey Carl,
Sorry to hear that you are going through this. I can understand how stressful this must be. Is the CAT scan and MRI already scheduled for next week?
I'm sending positive vibes your way and including you in my prayers. I hope you receive some answers to this soon. Please keep us updated.
Tommy
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Hope you had a good day Carl.
michael