To hydroxy or not to hydroxy: I’m sorry to keep... - MPN Voice

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To hydroxy or not to hydroxy

WileyFrench
WileyFrench
9 Replies

I’m sorry to keep asking questions as I try to come to terms with what you already have done, but just one more: is there anyone here like me, ET diagnosis with platelets in mid 600s for past year and a half, early 60s, healthy, active and asymptomatic, no plaque build-up in arteries, one mild TIA and now taking Clopidogrel to prevent further clots - and NOT - or not yet anyway - on Hydroxyurea? I’m going to put the question to my GP on Monday and depending what she says, maybe also back to the haemo, but I wanted to check the scenario here first.

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Mazcd
MazcdAdministrator

Hi Wiley-French, this is a question many people ask, but it really does depend on your individaul cirumstances, your haematologist will have taken into account your past and current medical history when advising that you start taking Hydroxy, and of course he/she will want to get your platelets down from the 600s, the normal platelet count is between 150 - 450 so this is what your haematologist will be aiming for, you can read more about this here

mpnvoice.org.uk/about-mpns/...

Best wishes, Maz

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WileyFrench
WileyFrench
in reply to Mazcd

Thanks Maz. I guess that’s pretty well what I thought. There’s probably no way around me taking hydroxy; guess I was just hoping there was. Thank you again.

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WileyFrench
WileyFrench
in reply to Mazcd

Hi Maz - I sent you a PM about a couple of other things although I’m not sure it went through! If it’s not in your messages let me know if there’s a better spot to send it. Thanks very much.

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Mazcd
MazcdAdministrator
in reply to WileyFrench

You did, and it did get through, and I have just replied, sorry for the delay in replying. Maz

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michaelg

Hi WileyFrench - similar to yourself diagnosed with ET in 2009 and been on Hydroxy for 9 years now. I regard myself as a fit 68 year old - go to the gym several times a week and eat as healthily as possible. Wish I wasn't on Hydroxy but I guess I am lucky as so far I have never experienced any side effects (also take aspirin and atenolol and simvastatin after a mild heart attack in 2006). Best of luck!

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WileyFrench

Thanks Michael - your situation does sound similar to mine, and I’m very glad to hear you’re active and side effect-free 9 years on. Gives me a lot of hope that I’ll be just like that too!

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Meatloaf9

Hi Wiley, I am ET Jak+ 68yo diagnosed this spring but probably had for a longer time. My last platelets were around 500. The specialist I saw said that he was ok with platelets in the 600-650 range without cyto reduction and only aspirin even at my age. I have little if any symptoms, maybe fatigue occasionally. I think he said the trend to put everyone on HU who is over 60 may not be necessary. He also told me the best predictor of a future clot or stroke or clotting event is a clot in the past. Best of luck to you on your journey with this mpn.

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WileyFrench

And I guess that did it for me: the minor TIA in May even though I was taking one low-dose aspirin a day. Although this haemo wanted to put me on Hydroxyurea a year and a half ago when my platelets were mid 600s (stayed about there the whole time), when I’d had no symptoms at all. So he seems to be pretty keen on it. I think one thing I will check out with my doc is whether they can test platelet “stickiness” now that I’m on Clopidigrel, cause if those puppies are not “sticky” I will definitely query staying on HU “just because”. Thanks a lot for sharing your story with me.

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Meatloaf9

Hi Wiley, I am not trying to give advice on anything. I just sent that post to say what my experience has been so far, I am new to this. We are all different. A TIA might have changed my treatment plan. Please discuss this with your hematologist and make your best decision based on all the available information as it pertains to your individual case. Wish we all fit into a mold and all reacted in the same manner to treatment. Actually wish none of us had any of these diseases. Good luck.

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