New dx, when to start médication?
Posted , 8 users are following.
Hello, I was diagnosted a week ago after asking my Dr for time off due to extreme fatigue. I am 51.She first thought it was a depression, but asked for a blood test Just in case. Went on Friday and got a call Saturday, my hemoglobine was at 194 and hematocrite 577. Saw an hematologist, got my first phlebotomy and bone marrow biopsy the same day since I was positive for JAK-2. Fatigue, very bad itching on feet especially in hot summer days, migraines and tinnitus are things I have been living with for years, hoping they will go away with treatments. My hematologist has already talked to me about Jakafi, what do you think? Is it too soon? Would it be preferable to start with Hydrea?
Thank you
0 likes, 27 replies
Zapamania marie-jos6518
Posted
Hi Marie I was dx with Pv 4 yrs ago. I just started Jakafi 2 months ago. Everyone is different. I have the Jak2 mutation. Are you sure your hematocrit is 577? That doesn't sound right. Please look again. Maybe you meant platelets. From what I know you have to go on Hydroxyurea first. If it doesn't work or you can't tolerate it then you can get Jakafi. I think it's an insurance issue cause Jakafi is $10,000 a month. HU is a lot cheaper. Please keep us posted. Good luck. Linda
marie-jos6518 Zapamania
Posted
My hematocrite is 57.7% does it make more sens? I am quite new to all of this. You're right about the insurance, I need to have a special form filled by my dr to have it approved. My niece who is a pharmacist thinks that I should wait before starting any medication, but my dr already talks about starting on it in january. I'm in no hurry to take anything, it probably depends on my results after my phlebotomies. I see my dr early January.
Zapamania marie-jos6518
Posted
Hi Marie yes now it makes sense. That is quite high. I think they want women @ 42 men a little higher like 45. The phlebotomys will raise your platelets. That's a given. You're on a good line. Many people here can help you. But the final decision will be between you & your dr. What are your platelets and is your spleen enlarged? Those are other factors that are relate to to your treatment.
angela_o..o marie-jos6518
Posted
Your haematocrit is high. That means that your blood is thicker than normal. That in turn means that you will have poor circulation which is probably (though I am not absolutely certain) why you get headaches and have tinnitus. Try to drink plenty water. This might help to temporarily make your blood thinner.
Zapamania angela_o..o
Posted
Hi Marie Angela is right. In Pv our platelets are higher than normal and they're sticky. Our biggest problem is that they form a clot. That could be devastating to us. So we are in danger of heart attack or stroke. Keeping hydrated is important. Drink as much water as you can. You definitely have to get that hematocrit down. If your dr wants you on Hydroxyurea go for it.
marie-jos6518 Zapamania
Posted
I live in Canada, thank you for your help. I have to remind myself to drink more water, but my dr put me on Aspirine everyday to keep my blood thinner. I don't know my platelets level I will ask when I have my next phlebotomy on wednesday. My dr seems to want me to start on Jakafi, if my insurance will pay for it. He says I'm too young to be on Hydrea for the rest of my life because there is a risk of developping secondary leukaemia.
angela_o..o marie-jos6518
Posted
A Dummies' Guide to Haematology, (written by a dummy.)
Haemoglobin: The oxygen carrying pigment in red blood cells. Red Blood Count measures the numbers of red blood cells in a given volume. Mean Cell Volume indicates the average size of the red blood cells. Mean Cell Haemoglobin indicates the average amount of oxygen carrying haemoglobin in each blood cell.
Platelets: The cells which clot the blood.
Haematocrit: The measurement of the number of red blood cells in the blood.
White blood cells: The cells which form part of the body's immune system. There are different types and they do different jobs. Neutrophils and Lymphocytes react to stress, inflammation and infection. Eosinophils react to allergies. Monophils react to chronic inflammation.
Zapamania angela_o..o
Posted
Orseblue marie-jos6518
Posted
Hello, I'm 50 and my hematologist keep saying when my levels is at 600 she will put me on the hydroxyurea, it's at 500 now.
She also not keen to start me on them.
paul250360 marie-jos6518
Posted
Good morning
Your levels are high but not extreme.
Hopefully phlebotomys will get those levels down fairly quickly.
l too have tinnitsus which l believe is pretty much untreatable but your other symptoms should subside.
l've had PRV for just on 27 years and aspirin and phlebotomys have been my only "medication" in all that time.
Drink plenty of water and keep as fit as possible and you should lead a normal life.
l'm doing a 100km (nearly 70 mile) walk next April and have done a number of 5/6 hour walk in training and feel great.
cheers
Paul
Zapamania paul250360
Posted
Hi Paul I've been following this thread and saw your response. You've had Pv for 27 years? May I ask how old you were when diagnosed. You sound like you've got a handle on it. I couldn't have done a 70 mile walk when I was 25. Hats off to you. Linda
paul250360 Zapamania
Posted
Hi Linda
l was 30 when diagnosed. l was a blood donor at the time and had a couple of high haemoglobin readings (17+ from memory) - had the bone marrow biopsy and another test which measured blood flow and PRV was diagnosed quite promptly - my GP suspected this right from the start.
My 3 monthly phlebotomy effectively is no different than being a blood donor. l've played sport (cricket, basketball and athletics) over this time without any problems. The long distance walking is relatively recent (over last 6 months) but apart from increasing my fitness level has helped my "dodgy" back.
All the best
Paul
marie-jos6518 paul250360
Posted
Hello Paul, thank you for your reply. It is very encouraging to read you. I do intend to work out more to stay fit. I walk most days when it's not -20 outside and want to start running as soon as my numbers allow it. The fatigue lately as taken a toll on staying in shape but I know it's important. I would prefer to stay off meds as long as possible. I'll have to talk about it to my dr.
paul250360 marie-jos6518
Posted
My haematologist has never even raised the subject of meds with me, probably because the current long term regime is sufficient. The only drug l take is Xareltol when l fly long haul flights which is far more convenient than Clexane injections. "we" try to keep the haematocrit under 50 but he doesn't get too concerned if it gets into low 50''s. Women's is naturally a few points lower.
l feel pretty lucky when l have my phlebotomys as l have them done in the Oncology day ward at a local hospital and am in and out in less than 30 minutes. The majority of other patients there are having chemotherapy for various cancers.
cheers
Paul
Zapamania paul250360
Posted
Hi Paul you were so young. You seem to be doing so well. I'm very impressed. I think I better re-think my low level exercise regiment. I'm not active enough and reading your story I think I better start moving a little more. I never exercised much cause I've never been overweight my entire life so I didn't think I needed to. I think it's time to rethink that thanks Linda
paul250360 Zapamania
Posted
l hope my "story" does motivate you.
l've always played lots of sports and tried to keep activate. l did snap my achilles 6 years ago playing basketball and ended up with a DVT and pulmonary embolism's which the PRV would have contributed to.
This could have been the end of me but fortuneately after a long recovery am 100 per cent. Did stop playing basketball (after 600 games over 15 years) though as my wife had a lot to put up with over this period !
cheers
Paul