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1st visit to Nurse specialist after starting Hydrea

Hi All, I hope this post finds you all as well, as can be. Its not yet 2 months since I was diagnosed with PV Jak 2 Pos, platelets had jumped to in the 900's, had a meeting with a nurse specialist as where I live the clinics are nurse led, she was very helpful however I didn't want to go on the Hydrea, though again the high platelets prompted me, so I take 1 x500 mg .Mon. Wed Fri and the 75 mgs of aspirin each day, after 9 pills, today I had a hospital appt, and my platelets are down to 571, very relieved, my haematocrit is 519. no phlebotomy as iron level is low, will see the haematologist in 2 weeks. I am taking my own iron supplement they are gentle on the stomach, and eating iron rich foods, and drinking ++ as the ferrous fumarate, can cause lots of side effects, and as I have IBS too, it was a step too far for me. Still so much to learn, and so grateful for you wonderful folks on the forum in the U.K. and our lovely friends around the world, we are one.

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That’s terrific news that your platelets have dropped so quickly; very good response to the hydroxy I’d say. Like you, I’ve been taking it only a fairly short time (since July) and like you I was taking one pill Mon, Wed, Friday. My platelets went from 660 to 558 and the haemo was pleased but had me up my dose to one pill 5 days a week. I see him Monday and hopefully there’s been another drop and we can hold the dose there. I hope, for both you and me, that our bodies just do what the med tells them to and we carry on carrying on - albeit with lots of water and sunscreen!

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Hi Wiley,it was a relief, and it takes time trying to get your head around looking and watching, and waiting for blood results. Along with understanding what they all mean As with all illness, a cure is very definitely what we all want. The less toxic drugs we take has to be better. Drinking water I think I have become obsessive, .Take care, very best wishes.x

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just a though: b careful with all that iron which could speed up the production of red blood cells and the rate of activity in yr bone marrow. but hopefully u have talked all that through with your nurse specialist?

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Hi Jane, thank you for your thoughtful response. I was aware of the iron versus red blood cells, the iron prescribed was about 124 mgs per day, that for me was a huge amount. Plus all the effects that taking iron can have on your body.The supplement I take has 17 mgs. And is doing a gradual build up. Take care. With very best wishes.Marilyn x.

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Hi ansaseeker,very good news on platelets front,l know its a bit of a shock when you are first put on hydrea & also coming to terms with an mpn in the initial stages.but in time you will come to terms with it & hopefully carry on as before you got your diagnosis. Did you have any symptoms before when your platelets were high? Sending you my best wishes.tina.x🤗

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Hi Tico, thank you for your reply, No I can't say I noticed any difference when platelets were high. Definetly become obsessed with drinking water which I have never been very fond of so some days its a real effort. Thank you also for your good wishes.Take care and my best wishes to you.xMarilyn

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Hi again marilyn, don't become overly obessive with your water intake,just sip it through the day,don't set a max than think i must drink that amount because its good for me,remember that too much in a short amount of time can actually be dangerous. I am like you, i struggle to drink water & still do, i'm coffee & engery drinks addict, again not good,me thinks we need to address our drinking habits don't we! Lol. Seriously regarding the water,little & often.tina x🤗

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Thanks Tina hugs xx

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I was told iron was a definite no no by my consultant. I think you are doing yourself more harm than good and definitely defeating the object of the medication you have been prescribed. I have just had my annual health check and, again, it shows I am anemic but I would never, ever resort to iron supplements. I am on Hydroxy 1000mg a day, 7 days a week which has helped me so much with my symptoms so I am putting up with the anemia and would never take iron.

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HI Jillyda brat. I was prescribed iron by a gastrointestinal consultant.he had all my bloods in front of him I decided to take a much less aggressive approach as I understand the correlation between iron red blood cells platelets I am no expert and have only been diagnosed 7 weeks tho I was a nurse. I think we all do our best though I wouldn't put myself in danger and my G.P.knows along with the nurse specialist. Thank you for being concerned .Hugs Marilyn x

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Hi again Marilyn, Please consult your Haematologist about what has been prescribed. If you read a lot of the stories on here you will find a lot of medical experts actually know nothing about PV as it's so rare. My GP hadn't a clue about the treatment.

Wishing you well.

Jill

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Hi, just read your post, I've been on hydroxy for 2 months now, visited the hosp today and my platelet count was 725 gone up from 700 a month ago. They have upped my hydroxy from 500 to 1000mg every other day, do you experience any noticeable symptoms I am worried sick feel tired now, do you take the 2x500mg tablets together or different times, please help, not sure what to do, forgot to ask

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Hi, my prescription definitely says take both at the same time. It’s printed on the label they put on the box.

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I too am on 3 capsules a week but with clopidigrel instead of aspirin. It has taken a few months for my numbers to drop with the exception of the whites which are remaining at 27. I was told not to take anything containing iron. I may query this at my next appointment as I often feel so washed out.

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Hi MCW22 I didn't feel any different before they said my iron store was low.and I don't eat red meats .only poultry fish etc.it's worth a question I was also told they do iron infusions. We do seem to get conflicting advice however we are individuals and we have to be treated this way.our bodies are not the same. taken care Marilyn x

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Check with your nurse about all the iron you are taking. Iron solves the anemia problem BUT it increases your red blood cell count and then your platelets go up and you will need more Hydrea to bring it back down and then your iron will drop and you will increase your iron supplements and the platelets etc. go back up again and more Hydrea. it is a vicious cycle. My iron levels are way below low and I can still function well. In short, increasing iron supplements means increasing Hydrea. Your iron should be kept low to help you stay on a low dose of Hydrea.

Good luck!

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Hi John, thank you for your reply, and yes I agree, I think the motive behind this is if a phlebotomy is carried out that would make you more anaemic, again counter productive, so its a balancing act, also I don't believe the gastro guy knew enough Re the consequences of prescribing iron I am drawing on my experience as a nurse. I was advised they also give iron infusions, so don't know if this is the route they like to go where I live, though I will challenge what I'm told.It really says we have to advocate for ourselves, and tailor the meds, the treatment everything to each and every one of us, we are individuals and we do need to be treat as individuals. Take care. Marilyn x.

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