Treatment for polycthemia...who's right?

I Have take hydrox ( for short )that’s the tablets what the Dr means  for4 /5 years with no side effects  good luck!

Could be your blood pressure tablet I couldn’t take it too many side effects I’m on biospprol now!

Hi faysie do you know what your platelets and hematocrit numbers are? You need to see an oncologist, a gp doesn't have a clue about our disease. The chemo I believe he's referring to is Hydrokyurea. The other chemo for pv is Jakafi. However, did you have a bone marrow biopsy? You definitely need an oncologist, and even they are not too familiar with our disease as it is so rare. Usually, when first dx we are told to take an 81 mg aspirin a day and get phlebotmies when our hamatocrit gets too high. Chemo is usually considered when platelets hit 1 million or symptoms are unbearable.  Zap

Hi Faysie I recently started on the chemo tablets and at the moment everything ok I'm also on asprin, ramipril, beta blocker, warfarin and allapurin . I was very cautious about starting them but its better than giving blood for me

Hello faysie. I have to suggest that you have headaches and high Bp because the aspirin is not controlling the high red count? It looks like you haven't seen a Hematologist. . If you see a Hematologist he will likely put you on a medication that will control the high red blood count. I have PV and am on Hydroxyurea, Have taken it for 7 yrs now, and am doing fine. It could maybe called chemo, but I just take the capsuls at home. When the red blood count gets very high, it can cause headaches, and BP if not controlled. All aspirin does is thin the blood so you don't get blood clots.Ask to be referred to a Hematologist if you haven't seen one. Best wishes, harrishill

Hi Faysie,

I agree with much of what Harris Hill has suggested.  You need to see a Haematologist who is the best qualified doctor to deal with PV.  I am sure that once you have been tested by this specialist your symptoms will decline and you will feel much better.  As Zapamamia has said, GP's are not the best qualified people to deal with this disorder for they rarely are presented with a patient with this disease and any they may be presented with, will be referred onwards to the Haematologist.  This is a very rare and serious illness and needs the best treatment available.

Do not be intimidated by the use of Hydroxycarbamide (Urea) as many have found it excellent to use in controlling their symptoms.  It is now considered a chemotherapy drug but not in the way you might suspect.  At one stage I used Ramipril but it really didn't agree with me and It was discontinued.  If I recall, it was used for cardiac treatment.

Most certainly, your BP needs attention.  Your Haematologist will devise the best way forward for you.  Make sure you are referred quickly.

Peter.

Hi Faysie,

You have the same symtoms I had before being diagnosed. As soon as I started the first treatments ( phlebotomies followed by Hydrea and now Jakavi) everything stopped. Even the migraines I have had regularly for 25 years, stopped. Like most say, you must see a specialist, the right treatment will help you.

Marie

Hi, I had a stroke caused by polycythemia 1 year ago today 26/09/2018. I went to hospital 0745 due to loss of dexterity in left arm. Only to have total loss of usability of arm same day. Doctors took blood for blood tests. Sent one to kings college who diagnosed PV. While waiting did venesection twice a week. Put me on hydroxycarbarmide. Few if any side effects.

I hope this helps.

Niloc