I was diagnosed with PV in Dec 2015 and started to take hydroxy in March 2016, 1 x 500mg Mon to Fri. At my 8 weekly appointments, I had a venesection on every occasion except one. In Feb this year, my dosage was increased by plus 1000g on Sat and Sun. In June, a further increase to 1,000mg every day as my haematocrit was 49+. At my appointment this week, my dosage is now 1,000mg and 1,500mg on alternate days. My haematocrit is now at 47+. I am hoping for the magic 45 at my next appointment. To me, this increase in medication seems quite rapid and I wonder is it just a case of all of us being individual and different (as well as special, beautiful and of course I must not forget modest).
On a positive note, I feel well and not nearly as tired as when I was having regular venesections when my iron was so depleted. My last venesection was in April. In the meantime, we returned on Mon from a 3 week holiday in Ireland in our camper van and had a 7 week tootle around Spain and Portugal April - June. I did a lot of walking and the necessary climbing, so many cities in Spain are built on hills. I wish I had known about the escalators in Toledo near to where we parked before I gasped my way to the top in such heat. I know I am very lucky in many ways and my question about meds is not a moan just an enquiry.
I have resisted getting a neck chain for my reading glasses which find their way upstairs when I am down and vice versa but have had to resort to old fart pill box with this 2 and 3 tablets malarky.
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Fionnuaghla
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The idea of the medication is to reduce the risk of what is politely called a thrombotic event - a blood clot causing stroke or a heart attack - and having had a good friend turned into more or less a vegetable by a stroke last year, that is something no one wants.
But I do very much relate to the feeling that this condition has made me prematurely old and incompetent -mentally and physically -and that makes me sad and angry. Glasses on a string (actually, I have lots of pairs of glasses strewn round the house, but they all end up in clusters, which is wherever I'm not) pill boxes (they are called "dossets", according to my local chemist, but I don't know why - sounds like -dose it - but that isn't it, apparently) with complicated mixtures of pills - my mother lived to be 93 and didn't have any of that.
The worst thing for me is the mental fog -not being able to keep track of where I saw stuff on line , and people saying -but we've had this conversation before -rather crossly -and we probably have.
OMG the escalators in Toledo. Diverted my kids for hours while we waited for a table in a restaurant just at the top. (We did however walk the walls circuit one evening. That was a long night!!!!)
I can’t comment on the Hydroxy dose situation save to say that my haem team were quick to up the dose when my platelets got stuck in the 600s after a couple of months on HU. I know my HCT in climbing again (unrelated blood test) so will be interested to see how we go on the venesect / dosage front when I see them in September.
Your trips sound wonderful. No way could I have done Spain in the summer - especially this summer.
Hi , when I was first diagnosed in 1996 my dose of HU was 18 X 500 mg a week, now 22 years later it down to 10 a week and a venesection every 12 weeks or so. Stiil going strong at 73. all the best
Thank you, Town Crier. It is very encouraging to know that your dosage was lowered over time. I am hopeful that mine will not be increased further at my next hospital visit.
Escalators in Torledo! I never saw them. Luckily enough I stayed close to the middle of the old city. The train trip around the walls was fantastic.
All things nice set aside. I’ve ET. For over 2 and 1/2 years my tablets have increased steadily to cope with increased platelets. Started anagrelide 2 weeks ago in addition to hydroxicarbomide. Positive results at the moment but too early to put out banners. I do hope your meds continue to give you good results.
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