Blood clots while on blood thinners.

[Smile2]

Have PV and on Hydroxyurea and blood thinners. Has anyone with PV had blood clots while on blood thinners ?

[lucieboo]

If you are getting blood clots and are on blood thinners I think you need advice from a cardiologist, this should not happen. I don't think it is anything to do with Hydroxyurea, unless perhaps you are not taking a high enough dose. Is your haematocrite stable and under 45%? If not, your PV is poorly controlled and your blood is too thick, hence clots: talk to the haematologist if so, or find a better one. I take 2 Hydrea daily, but have been up to 3, if the haematocrite goes above 45% I must have a bleed, at least 300ml. I take 2 x 5mg Eliquis (Apixaban) blood thinners daily as I have heart problems, they also seem less problematic re stomach, even coated baby aspirin caused me stomach problems.

Hope this is helpful. good luck!

[Hidden]

I was told by my GP that as I am on Riveroxyban that I could never get a blood clot. I have now ditched this idiot after having a number of strokes.

Although a different MPN, I have ET, I am also on 16 Hydroxycarbamide per week and have been for 9 years.

[Manouche in reply to Hidden]

« Never » is not part of the medical vocabulary! A molecule can vastly reduce the risk of a cardiovascular event... but can’t totally eliminate this risk.

[Hidden in reply to Manouche]

Exactly and that is why he is no longer my GP.

[hunter5582]

Blood thinner reduce your risk for thrombosis, but does no eliminate risk. Blood thinners increase your risk for hemorrhage, so it is a balancing act to get the med right. Like everything else MPN - your reaction to meds is unique to you. We do not all respond the same.

This is really something to review with a MPN Specialist. Your risk for thrombosis and/or hemorrhage is complex. It does not directly correlate with your platelet levels, but it does correlate with erythrocytosis. That is why controlling HCT is so important. If you are continuing to have PV related issues, it may be that your med protocol may need to be reviewed. Certainly consider the blood thinner, but it may be the hydroxyurea that needs to be changed. PEGylated Interferon of Ruxolitinib might work better. Or not. Definitely something to review with your treatment team.

[Mazcd Partner MPNVoice]

Hello Smile2, if you are getting blood clots then you need to discuss this with your haematologist, are you seeing your haematologist very soon, it may be worth asking for your appointment to be expedited, or speak to your nurse specialist. Best wishes, Maz

[JT_Marlin]

I was on a daily baby aspirin (81mg) when I had a stroke which ultimately led to my PV diagnosis. Now Im on a double daily baby aspirin, phlebotomies when hct >45 and weekly pegasys (45mcg). Havent had another stroke or TIA but I’m not convinced it wont happen again.

[aberbrothock]

Hello Smiley2. I came off blood thinners as don't like the fact when I get cuts how long the bleeding takes to stop. I am on 1g of hydroxycarbamide but periodically reduce it 500mg and so far after a number of years on it no clots even when I reduce the medication. Hope this is helpful.