ET: can anyone tell me, when you are put on... - MPN Voice

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ET

Jackie49
Jackie49

can anyone tell me, when you are put on Hydroxy why do you have to keep taking the medication.

Why can't you come off it when your platelets drop?

17 Replies
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You will have to keep taking Hydroxy you will start on a low dose to stop the platelets increasing and get the to drop to a level of 150 to 400 you will find a does that will then keep the platelets stablised. if you come off the hydroxy then your platelets will just start to rise again.

I have ET and got the platelets down to 400 but after taking the drug for a number of years started to give me side effects came off the drug at christmas and within 3 weeks had gone up to 1163 now on Anagrelide within 6 weeks platelets down to 436 feeling much better have a few side effect with a rash and palpitations but otherwise feel so much better.

mickey64
mickey64
in reply to Irishmod

hi I had tons of side effects with HU, stop it on the advice of an expert but then platelets shot right up, but interesting enough came down a week later so I think it just depends when you have the blood work done. My local wants me to try it again at a lower dose, three days a week and then he said he would talk about angrylide before pegasy. Hmmm many cannot take angrylide I have heard, causes palpitations, headaches and fluid retention? May I ask how old you are and how long were you on HU?. guess I will consider it if I start back and get all the dreaded side effects. thanks Mickey

mickey64
mickey64
in reply to mickey64

Also want to mention that since I have been off the medicine getting burning feet, arms and headaches, never had that before I started HU or maybe I never notice it and sometimes feels like face is burning but nothing is red.

Spirit123
Spirit123
in reply to mickey64

Before I was on hydroxy I had terrible burning pain in my feet. Since taking the pills it's been fine. I tolerate hydroxy well.

Jackie49
Jackie49
in reply to mickey64

I am 50yrs old, and my doctor was talking about putting me on Hydrox.

I was shocked when he said you will be on it for good. On my last

visit to him my platlets dropped on their own . So I am only taking

asprin at moment.

Irishmod
Irishmod
in reply to mickey64

I am 55 was on HU for 3.5 years and had lots of side effects as a result of the HU now 8 weeks on the angrylide and feel much better more energy, no aches or pains and just generally feel much better I am pleased so far with the results and feel this is better than the HU . I do have a rash as a result of the angrylide and some palpitations but this has improved and getting better all the time, no headaches or fluid retention. I also had really bad restless legs on the HU still have this problem but has improved now that I'm on angrylide

I recently had my dosage almost cut in half after the first 6 mos. 1st retest shows slight increase but far fewer side effects. Hope to stay there for awhile. I have heard of venestrations fior pv, wondered if it is ever used for platelets?

jane13
jane13
in reply to Kerri2

re venesection for platelets

i think platelets have a very short life span, a matter of a week or so, so you'd have to have very frequent venesections to keep them under control. also i'm told that if u do this the platelets u make r smaller and funny shaped and tend to be "sticky" so more risk of clots. so i think venesection for platelets doesn't work

Kerri2
Kerri2
in reply to jane13

That would make sense. Have seen people on this site talking about venestrations for PV. Wondered if it was used more in the UK than in the States?

Kathymoore
Kathymoore
in reply to Kerri2

I think the difference is the US calls it phlebotomies and the U.K. calls it venesection.

mickey64
mickey64
in reply to Kathymoore

Hey there Kathy, how are you doing?

Kathymoore
Kathymoore
in reply to mickey64

Doing well, thanks. Down to one Hyrea a day, hopefully that will keep the platelets where they belong!

mickey64
mickey64
in reply to Kathymoore

Great new Kathy did they go lower? then your last visit?

Blood is sure complex. Insurance carrier has an app that lets you graph test results which is interesting. Platelet s are 260 but everything else is at low normal or just slightly below. Low rbc which I thought might explain shortness of breath, but pulse ox is good? Also a question I had was could you be JAK2 positive and not have a MPN?

Your bone marrow replaces your platelets every week or so i think, and hydroxy just supresses your bone marrow's activity while u r taking it, doesn't have a permanent effect. So if u stop the hydroxy your platelets will be back to their usual level very quickly.

The Hydroxy suppresses the bone marrow, which not only stops over producing to many platelets it also stops you over producing to many red cells. Every 3 months your blood cells die and then are replaced by new ones. That is when people with PV, ET, etc over produce to many cell's. The venesection reduces your cell count to the right levels, where as the Hydroxy stops the over production of cell's. As we know there is no cure for these conditions at the moment, so you need to take them as prescribed by your Haematologist even if your platelets have dropped.

Best Wishes

John

Hi John

Thanks for the explanation it is the clearest one I have read so far. June.

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