Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?

[azaelea]

I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis

[Paul_1971]

hi, I have Pv and have had bleeding. do you have an enlarged spleen at all?

[piggie50]

Hi,

I have PV. I had a bleed about 8 years ago and was in hospital for 5 days. I had every test going which showed nothing untoward. My aspirin was changed to clopidogrel, I also take Lansoprazole for hiatus hernia. I don’t remember what my platelets were at the time, I always had high platelets prior to commencing Hydroxy. At my post hospitalisation check up the consultant could give no explanation for the episode and said, in his opinion, sometimes, with PV he feels it is the body’s response to get rid of excess blood. I certainly didn’t need venesection for a long while! He advised if it happened again they would have me swallow a camera to see what was going on. Thankfully, no further episodes. Not an experience I would like to repeat.

I hope you are ok now?

Judy

[PhilReade]

Hi I’ve got E T jak 2 positive no spleen I had a bleed ended up in A&E had all the tests but nothing showed up

I’m on Apixiban now was on Clopidogrel

[23938112]

I have had this. My platelets were over 1000.

[lizzziep]

I was very anaemic although my platelets were reasonably normal levels, so doc decided I was bleeding from somewhere and I had the camera up and down (I've had better days!) it showed lesions in my stomach and a sliding hiatus hernia which I didn't know about. However they said no serious bleeding from anywhere. That was 18 months ago. Last week haematologist said I could finally stop taking the iron tablets as I was no longer anaemic. Two days later - loads of blood in my urine! I'm still awaiting test results for that. I think our blood just doesn't know how to behave nicely.

[Bears23]

I had stomach bleeding caused by the aspirin, which apparently is somewhat common. I managed fine on the aspirin for many, many years, but....hope all is well.

[hunter5582]

GI bleeding is a known side effect of aspirin and other blood thinners. ET can on its own cause hemorrhage as well as thrombosis. If you are JAK2 positive, you may be more prone to various forms of inflammatory conditions, including GI problems. Of note, GI inflammation can cause an increase in inflammatory cytokine production and increase hematopoiesis. Therefore, it can be difficult to sort out a symptom like a GI bleed. I learned this the hard way during a period of GI obstruction and serious inflammation. Found out at this time that I also had a hiatal hernia. The bleeding was caused by a lower GI issue, specifically a ruptured hemorrhoid. Note that bleeding can also be caused by polyps.

It took some time for me to get this all sorted out when it occurred. The GI doc had no idea at all about the MPN and what it implied. The hematologist did not really track the implications of the GI issues. The docs did not work together. Have since learned how important it is to require providers to collaborate and work together to provide your care. I now take charge of this and act as my own case manager, driving the sharing of information and collaboration process.

You will need to get to the bottom of the source of the GI bleed. While it is likely something minor, it could be something more serious. Best not to make assumptions. Whatever it is, aspirin or other blood thinners will make the GI bleed worse. Best to consult with the docs about that too.

All the best to you. Hope you get answers soon.

[lizzziep]

How are you? Have you been able to get any medical advice or tests? I'm still waiting for my test results. Hope all goes well for you. Let us know how you are. X

[Uzza]

Yes, about 8mths ago. I can't remember what the platelet count was.

Cheers.

[JaK2ET]

I hope you can get help soon to solve the GI bleeding. Good luck!