When I was diagnosed a year ago with ET/PV I had already had a blood clot in my leg (large but superficial) followed a few months later by a small clot in my lung after treatment for a varicose vein. This was followed a few months later by two small clots - one in each lung. I was put on Xarelto 20 mg. daily. It was at that time that I was referred to haematologist even though my GP had known for 2 or 3 years that my platelet could was high and on one occasional my red cell count was high.
I was put on 500 mg daily HU and three months later was told to take an extra 500 mg. on Saturday and Sunday. Then this was reduced after a few weeks to 500 mg. daily again.
When I went for my second haematology appointment I was told they were trying to get my bloods to a satisfactory level so that I could stop the blood thinner.
When I asked about this at a later date I was told they wanted me to continue on the HU and blood thinner but did not give me a reason.
Does anyone here know if it is right that I should be still taking Xarelto as my bloods are now "normal". I do not hear of anyone else on the site mentioning that they also take a blood thinner.
Thank you
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Jelbea
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The risk of thrombosis with ET/PV is not just about the number of blood cells. It is about how the blood cells behave. There is no linear relationship between platelet levels and risk of thrombosis. There is, however, a linear relationship to PLT levels and risk of hemorrhage, The higher the PLT, the higher the risk of hemorrhage. It is an oddity in dealing with thrombocytosis.
Given your history of thrombosis, I would expect your docs to recommend staying on some form of blood thinner. The good news is that your care team chose Xarelto (rivaroxaban), which is a NOAC (novel oral anticoagulant). NOACS have fewer drug or food interactions, have more predictable pharmacokinetics, and may be associated with reduced risk of major bleeding. the-hospitalist.org/hospita...
Definitely review your question with your MPN care team.
Thank you Hunter. so little was explained to me. I am glad of this forum to find out more. Even when I had the first clot my platelets were only slightly raised. I am grateful for your info re Xarelto which I seem to tolerate very well.
I would certainly continue to take it in your situation. Do please push for more thorough answers to your very reasonable questions. Providers owe their patients complete information.
We are obviously all different and your consultant should explain his/her reasoning, but I was put on Xarelto/ Rivaroxaban 7 years ago after a lower leg DVT. It was later changed to Eliquis/Apixaban 2.5mg twice a day. I understand I will always be on a blood thinner and tolerate it well. Just have to be careful to take it religiously at the same time each day as it only lasts 12 hours and also be careful not to cut oneself. I have seen other posters in the past mention being on one or other of these more modern blood thinners plus of course warfarin.
Thank you DJK - I tolerate Xarelto very well and do not really mind taking it. It is a once a day dose. I just could not understand that one doctor told me that when my bloods stabilized I would be taken off the blood thinner and then three months later was told to keep taking it. They did not give an explanation and there had been no change in the meantime. Thank you for your reply. I am still learning. Take care
I am on both Xeralto and HYDROXY UREA...my PLATELETS were up to 765 HEMATOLOGY SAID TAKE HYDROXY UREA IT WILL BRING YOUR PLATELETS DOWN...ONE MONTH DOWN TO 620....DUE NEXT WEEK FULL BLOOD COUNT...I HAVE THIS EVERY MONTH...XERALTO IS AN AMERICAN DRUG FAR SUPERIOR TO WARFARIN....ONE NEEDS TO KNOW IF ANYONE IS ON WARFARIN YOU ARE NOT ALLOWED VITAMIN K....WITH XERALTO YOU CAN EAT K. ....I DID ALL MY RESEARCH MYSELF....NHS HAD ME INJECTING CLEXANE EVERYDAY INTO MY STOMACH ....
AGAIN NOT NEEDED ON XERALTO..
EVERYDAY I HAD TO ATTEND SURGERY TO HAVE INR INJECTION INTERNATIONAL RATION...AGAIN NOT NEEDED ON XERALTO. IT WAS HELL, UNTILL I RESEARCHED XERALTO....I HAD TO ASK MY HEMATOLOGY CONSULTANT WHEN HE PHONED ME, TO CHANGE FROM WARFARIN RAT POISON TO XERALTO, HE WAS SO IMPRESSED I KNEW ABOUT IT,
NOW, THE REASON
WHY NHS DONT WANT US TO KNOW ABOUT XERALTO ID DUE TO THE COST....
Thank you for your good information. I was lucky to be put on Xarelto straight away instead of warfarin. I know the trouble of being on warfarin as my late husband was on it for a few years and was always having to get blood checks. I am glad you are now on Xarelto as it is easier for you. Good wishes to you
I am on blood thinners (apixaban) after a clot in the lung in 2018, I was put on 5mg twice a day for 6 months and then 2 and a half mg twice a day. At the age of 73 I was told to stay on it for the rest of my life to avoid further blood clots. Could you tell me how you knew that you had blood clots, where was the pain, discomfort?
Hi Murdoch - My first blood clot was in my leg and was a large superficial clot which they said could have moved deeper at any stage. I still had not been diagnosed with ET/PV at that stage. There was pain and swelling behind my knee. A few months later I was advised to get that vein dealt with and had the foam injected into it (I cannot remember what that is called). Six days later I had a very dizzy spell lasting a couple of hours and over the next few days became breathless. A&E diagnosed a clot in my lung. After two clots you would think my GP who knew I had raised platelets would have acted. However, he did not and a few months later I was again admitted with breathlessness and had a small clot in each lung. I feel lucky to have survived all these and was only diagnosed with the MPN nine months after. The hospital did not even do anything about the raised platelets.I would say to you that the breathlessness was not really that severe and each time I left it for a few days before doing anything about it. I would certainly react immediately now if similar happened. I had pain in my leg with the first one but no pain in my chest with the other three. I hope this helps but at least we are both on blood thinners now so hopefully clots will not be a problem. Take care
Exactly same happened to me, I am still on Xeralto and Hydroxy...maybe, Hematology want to see if our Platelets are consistent between normal of 150 to 450....mine sky rocketed to 765 in the beginning...what help me was sprinkling Cayenne Pepper on all my food. In 2 months, back to normal, you see Cayenne thins the Blood, plus never a heart attack.Good Luck on your journey,
Hi Lasbrisas1 - I have got your message but I am not sure what it refers to. I assume it has something to do with me being in hospital recently and being put on Clexane injections instead of Xarelto which increased by platelets and made it necessary for me to increase HU.
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