I was diagnosed with ET JAK2 positive in 2016, my platelets have never really been higher than 550 however I was diagnosed after having a splenic infarct, sine then have had a splenectomy and small bowel resection due to inflammatory cyst in my bowel. I have been treated with Hydroxyurea (low dose of 4 times a week) and visited my GP last week as my toe was so painful and had turned white. My GP sent me to my local hospital where I was admitted for tests with the vascular team. I explained my illness and asked them to speak with my haematologist however they didn’t do this and after tests confirmed the cause of this pain was a micro blood clot that has ended up in my toe. I have now been prescribed aspirin as well as clopidogrel and am going back for an echocardiogram and 24 hour heart trace.
Just wondering if anyone else has suffered anything like this and any advice moving forward?
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Janlol
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I have experienced microvascular pain in my toes, but never a clot per se, The JAK2 mutation can cause an alteration in how the blood cells interact with the vascular endothelium. Pain and swelling result, but normally with a reddish appearance.
It was irresponsible for the hospital to not consult with your hematologist regarding something that was clearly a MPN issue. Suggest in the future that you mandate it rather than request it. If the hospital does not call, then call the hematologist yourself. Assertive patients receive higher quality care. Passive patients do not.
If you have ET and have a thrombotic incident it most certainly is related. Likewise a microvascular event. This bears very directly on your treatment regimen for ET. Your hematologist should have been contacted immediately.
NOTE: if your hematologist is not a MPN Specialist, it is time to contact one for a consult. Here is the list just in case you have not seen it lately.
Hi, Janlol, yes I had exactly what you have last year , very small blood clot in my little toe, right foot. Toe went purple and excruciating pain for about 3 weeks until I eventually was seen by a Dr. In Haematology who suggested it was a clot. I had an MRI scan and was given Clopidogerel as I’d had a suspected intestinal bleed about six weeks previous and taken off Aspirin, thus I wasn’t having any blood thinners till toe pain started! The Haemo Dr. Liaised with the Vascular Dr. And I eventually had appointment at Vascular clinic but by then the blood thinner had worked and my toe was on the mend. You have my sincere sympathy as I have never had pain like it and hardly any sleep for3 weeks! It was just when lockdown began which made things more difficult. I have ET JAK2+ and still on Hydroxy and Clopidogerel. Good luck and really hope your blood thinners will do the trick. Kind regards, Fran
Thank you Fran, I’m glad I am not the only one 😂I agree the pain is awful ! I thought I had somehow hurt it but it was only when my daughter said it was white that I thought I better get it checked with my GP who is fantastic. I am waiting to speak to my haematologist and will be interested for her views on this, I want to be as prepared as possible for my outpatient vascular appointment 🙂.
HiI too had a splenic infarct but it was diagnosed after the fact. But I’ve had many blood clots in my lungs & almost died from them on one occasion. I was in the ICU for a long time & it caused some permanent damage requiring oxygen every night & when I get sick with respiratory infections. I’ve been on blood thinners ever since. Over the years a number of folks on here have described blood clots leading to numerous things including heart attacks & strokes. I’ll be on blood thinners for life I suspect along with baby aspirin. Also on Hydroxyurea. If you read about MPNS, or at least ET, you’ll find that most deaths are caused by blood clots or hemorrhaging. So it’s good to be proactive. So glad you’re ok now. Katie
Yes, it’s what lead to my diagnosis. Although I dislike the need to oxygen I know I’m lucky. Some who get strokes have more debilitating permanent damage. Good luck.
Oh from one stroke suffer to another I count my blessings- I have a tiny disability - weak neck only found that out when I went back to trampolining. Keep well xxxx
Hi there. Some years back I had episodes of the most horrendous searing pain in my toe. It was enough to make me double up and catch my breath. It lasted over a weekend and I happened to have a routine check with my haem team (Guy’s Hospital) the following week. I was told if ever happened again I was to get in touch with them immediately.
It’s imperative that you speak to your haematologist and prompt them to instigate some joined up care at the hospital. The fact you have an MPN should be flying red flags and ringing all alarm bells. Wishing you well.
Thank you, I agree, both weird and frustrating, especially as I was in the same hospital as where my haematologist is based! The strange thing is each of these episodes (spleen and toe) my platelets have never been higher than 500 so when they look at my blood results they say oh they don’t seem too bad we doubt it’s a clot but when they carry out further tests it appears that it is. I am getting slightly worried but I am still waiting for a call back from my haematologist who is a MPN specialist so it will be interesting what she has to say.
Thank you for taking the time to reply and best wishes
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