Numbers dropping.: PV JAK2+ I have been on Hydro... - MPN Voice

MPN Voice

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Numbers dropping.

shiftzz
shiftzz

PV JAK2+

I have been on Hydro, aspirin and veneection for over 4 years, last October they decided to add Pega.

Since then the numbers have dropped, but, not the HCT, loads of venesection... Blood test last week, 'phpone consultation' sort of. Changed in pills, Hydrom dropped by 4 x 500mg a week, extra Venesection.

I see my consultant on the 15th.

Don't understand, decrease Hydro, more venesections...

Will have to have strong words with consultant, last time we spoke, they were concerned that my iron levelswould be overdepleated by Venesections.. I have one today...

Itching back, sweating back...

6 Replies

looks tricky, u obviously want yr Hb to come down without affecting anything else too much and no obvious way to do this. I guess the thinking may b that lower hydroxy will allow yr whites and platelets to rise while venesection is ideal for getting rid of reds. I wonder if it's worth asking about ruxolutinib: i know the NHS doesn't normally prescribe for PV but u could argue that u r not responding to other therapies?

Same for me,HCT stays high,HgB high but not as much as H CT.....now on extra Hydrea 3 2 3 alternate days.I feel wiped out and the heat we still have in France is just about killing me!!! I think my Consultant is baffled,I certainly am,new blood test next week,here they will not do venesection,I have a stent,courtesy of the P V blocking an artery,think that is the reason.Had them when first diagnosed to get H C T down from 80!!!yes and I had no idea I was so ill.....!!!!interested how you get on,at this moment I am worried what next.Hope all goes well with you in the near future,Best Wishes,Sally

shiftzz
shiftzz in reply to Inca

Hi Sally.. They have reduced my hydro to 2,1,2,1,2,1,1 it was 2,2,2,2,2,2,2 Hctb at 80, you must have felt really bad, I was strugglig at 61. I am also on interferon..

France , love it , my goddaughter lives in Lyon

Inca
Inca in reply to shiftzz

Totally different way here to manage MP Ns......I was ill when in U K visiting daughter,tired,red eyes ,lead legs...a Dr I saw told me I was doing too much ,I am sculptor had done expos U K and Holland.No suggestion of blood test...saw my G P in Fr. Who took one look at my red eyes ,blotchy face,was in Urgence immediately ,and diagnosed in hours. I am blood tested every month and my GP and consultant liaise there and then re the amount of Meds.I do remember Hydrea being stopped when whites ,reds and platelets dropped dramatically.P V was discovered by a French Dr ,so maybe that's why they are more aware of symptoms....actually there is no panic either if H C T is 50, as long as everything else is ok.....where in U K it's venesection at 45....hope yours went well today.....it is a mystery disease.Keep going ,things do take a good turn as well.Great to have this site and know of others similar.

Sorry for diatribe,laid in cool room,thinking of the blessed P V!!!!Best wishes again.Sally

catwoman2015
catwoman2015 in reply to Inca

So sorry to hear your suffering sally and it’s still hot where you are ! Do hope your next bloods show improvements sending all the best to you and hope you feel better in yourself very soon regards Holly xx

Inca
Inca in reply to catwoman2015

Hi Holly,

Just read your worry of an op...in the last few years I have had several,breaking femur ,arm,removal of carcinoma....full anaesthetic,no problems at all. I also have had asthma all my life,(horses ,dogs,hay,dust)!!!! I think I had to stop Clopidogrel before ,but not Hydrea or any other Meds.So don't worry you will be fine,I was scared the first time never having had any op or hospitalisation until P V.The theatre staff were great and comforting,jolly and joking to keep me at ease. Thankyou also for your answer to my discomfort at the mo.....always something!!!

Today is cooler for the first time ,following a mighty storm...I feel a lot better,at last I can breathe. So sending Best to you and don't worry ,all will be fine.Sallyxx

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