Hydroxy

[Andra13]

If your platelet level comes down to normal on aspirin do you have to go on hydroxy when you’re 60?

[mhos61]

Aspirin does not reduce platelets. It’s given to make the platelets less sticky to help prevent thrombotic events.

Reaching 60 years of age puts you into the ‘high risk’ category. Most haematologists will want to discuss cytoreductive therapy at this stage. As long as you have all of the relevant facts and are aware of the potential risks, it’s a personal choice whether you commence treatment or not.

[katiewalsh]

Dear Andra13, In case you’re worried about a doctor asking you to get on Hydroxyurea, you should know that lots of us have been on it and some of us for decades. Most have little if any problems on it. If a doctor does recommends it, I suggest you ask her or him what specifically it’s to prevent and what level your risk is if that’s possible to determine. For some of us we found out too late and had a range of adverse medical problems. I, for one, have to always sleep with oxygen now because blood clots (caused by my MPN) permanently damaged my lungs. And when I get respiratory infections I have to be on oxygen 24/7. Others on here have had damage from heart attacks, various degrees of damage from strokes, etc. prior to getting on it. I’m just suggesting you make your decision after getting as much info as possible from your doctor. I was 63 when I almost died of blood clots. It was after that, and then the diagnosis of MPN, that my doctor recommended Hydroxyurea. Reading about the drug scared me & I still didn’t sufficiently understand the risks of my not taking it so it was awhile before I did get on it. I’m just lucky nothing happened in between my diagnosis and my getting on it. Fortunately some doctors finally did explain to me what the risks were. Good luck with your decision, it’s not always an easy one. Also, remember that you can always try it & see how it is for you to be on it. We’re here to support you regardless what you decide. Katie

[Andra13 in reply to katiewalsh]

Thank you. It never occurred to me that I could try it and see how I was with it. I was thinking once you’re on it that’s it. Stupid of me!!

[Ebot]

60 is just a number! Your haematologist may well have a conversation with you about appropriate disease management when you hit the Big 60 but everyone is individual. If you’re doing well on aspirin and don’t have other issues that compromise your health my guess is that they will hold off the drugs especially if you are symptom free and reluctant to go on them. It’s always worth having the conversation, understanding both the risks and the choices and then making an informed decision.

[hunter5582]

The thinking about HU is shifting away from everyone being on it automatically. The British haematogical Assoc. just shifted "high risk" to age 65 instead of 60. Some docs do not treat for cytoreduction until numbers up around a million. As we age all of our risk factors increase. Each of has a potentially unique presentation of our MPN and one size does not fit all regardless of age. We also may well have other conditions that impact what meds we can take. While HU is well tolerated by many people, it is not a completely benign substance. I had toxic effects at even low doses. The good news is the adverse effects usually subside when you d/c the HU. There are other choices for chemo-cytoreduction if you need it then you can discuss with your doc. ALL of these meds come with risks as well as benefits. Regarding ll of these meds, you never "have" to do anything. It is your body and your choice regarding what you put into your body. Doctors make recommendations - you make decisions. You can always seek a second opinion if you are unsure what to do. It is a good idea to seek out a MPN-expert doc as many hematologists do not have much experience with MPNs. Here is a list of MPN-expert docs recommended by patients mpnforum.com/list-hem/ . All the best to you.

[Andra13 in reply to hunter5582]

Thank you for replying. I was diagnosed in February and sort of feel I should go with what the consultant suggests but I now realise I have choices.Thanks to everyone on here xx

[Andra13 in reply to hunter5582]

What does d/c mean?

[hunter5582 in reply to Andra13]

Standard medical abbreviation for Discontinue. After a while you start talking lime a doc. Have actually had nurses ask if I was a doc. NO! LOL.

[Kelly2]

Your platelets came down without drugs?

[Andra13 in reply to Kelly2]

Well I’m on aspirin. I don’t know if that brings them down or just makes my blood less ‘sticky ‘ I’m sort of new to this

[Kelly2 in reply to Andra13]

No just aspirin doesn't bring them down.

[Andra13 in reply to Kelly2]

It’s not a big drop. I suppose fluctuations can just happen?