I'm curious if you could share with me whether you've had any blood clots since your MPN diagnosis, and when you were diagnosed with your MPN. It's one of my biggest concerns since my diagnosis, although I (thankfully) haven't had any personally, and am hoping that continues to be the case. I'm particularly interested to hear from folks who do not have the CALR mutation (as my understanding is that it more likely causes bleeding than blood clots).
I realise this "poll" is entirely unscientific. I am aware of what the literature says, but am curious about your own lived experiences.
Thanks in advance! 🩷
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ETinNYC
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I have never had a thrombosis in over 30 years with a JAK2 + MPN. Used to be ET but progressed to PV. I have had excessive bleeding & bruising at times. Have also had erythromeralgia when off aspirin.
I’m curious to know too. I was diagnosed with jak2 positive pv in 2021 aged 51. Take aspirin and have monthly blood tests to determine if I need a venesection atm but I also have raised platelets 700-800. Sometimes 900. Do I have ET too or have I progressed straight to pv? Still not clear 🤔
No blood clots since diagnosis with PV, JAK2+, ten years ago, at age 67. I've had excessive bleeding at times. I understand that there are "bleeders" and "clotters", and thankfully so far I've been a bleeder.
I'm diagnosed with PMF, CALR mutation. Original pulmonary thrombi 15 months ago lead to the diagnosis with 1200-level platelets. Since then, no clots, as I'm on rivaroxaban with hydroxyurea to bring platelets under control (~450 for many months).
I’m 45 now, was diagnosed at 23 after a major bleeding event, at which point discovered Jak2+. Have portal vein thrombosis since my early 20s (which causes all sorts of havoc) and more recently smv clot (superior mesenteric vein) the latter, thankfully, largely cleared with prompt treatment.
My portal vein thrombosis didn’t clear so remained in place, and I went on develop varices which I only discovered when I had a major bleeding event. Many years later the portal pressure caused my body to create a shunt to bypass the liver so I developed hepatic encephalopathy. The shunt was successfully closed off but following the procedure I developed another clot, in the bowel (smv). This cleared with treatment, all well now!
I'm 57....PV , Jak 2+....diagnosed in 2020. Currently on clopidogrel daily and Pegasys interferon 90 1 x weekly.Occasional venesections, but not for a few months now.
Had an episode similar to a TIA recently whilst in hospital after being given cyclizine IV.
What I find so surprising is the variation in treatment regimes and how so many of us are still on older recommended treatments. I had to push my haematologist for interferon which works perfectly (after a wait of 9 months). Diagnosed at 51. Jak 2 positive 14% allele burden. No clots but do bruise easily probably due to baby aspirin once a day. Should we be trying to update our u.k NHS doctors. They have no time to update themselves?
no clots with PV 13 years, I would like to think these strategies help. Keep counts well controlled especially Hct if PV or Jak2, I take baby Asprin, I keep slim and fit, I move every hour or so and do some kind of walking, stair climbing, jog, cycle etc before each meal , before breakfast 5 minutes climb stairs, before lunch 15 minute brisk walk, evening 20 mins fast walk and 20 mins light weights. In other words I like to keep the blood pumping , more the better. Personally I take K2 but check with doc first. I also try to eat healthy, optimise vits and hormones. Try to keep BP and cholesterol under control. This is not a recommendation just what I do.
I am 54 diagnosed with PV in 2017 but know my blood counts were a problem since at least 2012. I take hydroxycarbamide (2 tabs 5 days a week and 1 two days a week) and daily aspirin. I had lots of odd symptoms prior to diagnosis which included burst veins on my foot and chest pains which may have been minor clots. Nothing since diagnosis but I do bleed and bruise easily and have had occasional tiny bleeds in my eye or small burst veins in my fingers.
71 ET Jak2. Diagnosed 9 months ago, on Pegasys. Minor stroke 3 years prior to diagnosis (all my blood counts were normal at the time of stroke) and fully recovered. No thrombosis since. On baby aspirin since stroke.
I have primary mylefibrosis jak 2 positive I have had several blood clots 2 dvts in left lung portal vein thrombosis I was initially diagnosed because I presented in hospital with liver failure and pvt shortly after o was told o had mylefibrosis and that was more than likely the cause of my clots I developed varices in the throat and stomach and started having quite severe bleeding so my blood thinners were stopped I suffered 2 further clots in legs that traveled to my lung iam very closely monitored now my bleeding is under control so iam on dabigatran to thin my blood but iam always nervous of more clots I was 24 at time of diagnosis and had given birth by c section 6 weeks before
I am JAK2 positive diagnosed about 6 months ago. I was having prolonged headaches in December last year and it turned out due to multiple clots. I previously thought headaches were from boxing bouts. I am 34. Wishing you all well;]
I've had high platelets for 30 years, am now 65, and was only diagnosed with JAK2 PV last fall. I have had no clots I know of, though I wonder about some of my odder aural migraine episodes now. Please tell me, someone, what clots in the calf feel like. I have a bruising sensation there, but nothing obvious on the skin, very tender to the touch. I also had acupuncture there yesterday, so perhaps that is all it is. But I'd like to know what the early symptoms of clots were for those of you who have experienced it. Thanks, and be well.
Hi, I have had ET for three years and take hydroxy and clopidogrel, I am 64 years old. Up to the present time I have not experienced any blood clots. I have always been very active so have continued to do so making sure I carry out an activity every day. I am lucky that I never put weight on but still maintain a healthy diet and I also have a cardio vascular risk assessment at my GP surgery every year ( recommended by my blood consultant). Leading a healthy life style must help us in some way but I must be honest this is something that continues to worry me on a daily basis, it appears there are many people on this forum who have experienced blood clots. Good luck on your journey and lets hope it is clot free.
I had multiple, massive thrombosis which led to my diagnosis of Iron deficient PV / Pre-fibrotic MF, but haven’t had any more since I commenced treatment. The blood thinners and hypertension then prompted 3 massive bleeding events but since changing to Pegasys and Carvedilol, I’ve been much more stable and have been that way for two years now.
Small stroke in 2008 which eventally led to diagnosis of Et jak2 after multiple tests and bmb. More significant stroke in 2015 while on hydrea and aspirin, aspirin was then replaced with clopidogrel. At present take 3 500mg a day,7 days a week but have taken up to 5 500mg a day.As an aside vascular problems, ie, stroke, heart problems run in the family especially on the paternal side, father died at 58years after 2nd major stroke and 2 of his brothers died at 46 and 61 with heart problems.
My own brother died suddenly in the last few weeks suddenly at 51 years old, just had the post mortem report, devastated to learn it was coronary heart diesease, non smoker, moderate drinker so I wonder if my own strokes relates more to my mpn or a genetic trait on the parternal side on my family.
Oh Tina, I am so sorry to hear that you lost your brother, at such a young age too. Sudden death is particularly tough on family, and it will take some time to come to terms with.
I also understand you questioning any genetic predisposition with regards to your own health. Hope your family history is something your healthcare team are aware of.
I have JAK2 positive ET diagnosed in 2018/19 but platelets were high, in the 600s, in 2014 (no blood tests on record before this). I have not had any clots but have had both hemorrhages & a haematoma after surgery (the first one about 20 years before diagnosis).
I had high platelet counts after routine blood tests these continued with further tests so had a referral to haematology in May, before seeing haematology I had a TIA in April and was referred to stroke clinic put on Clopidogrel and statins - now on Hydroxycarbamide since June. I am still unsure if the TIA was related to the high platelets but due to me being high risk now had to start with the Hydroxycarbamide 500mg daily. Will check with consultant when I see him in August whether this was a factor in the TIA?
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