I'm still waiting for a definitive diagnosis (likely ET, JAK2 negative) and had my first haematology consultation today. I'm still awaiting the results of MPL and CALR tests and I am now finally scheduled in for a BMB and a plethora of other tests in the near future. I've been doing copious amounts of reading and was quite perturbed today when the haemotologist said quite emphatically that my previous pulmonary embolism (being a venous thrombus) at age 18 (I'm now 40) was likely an unrelated incident and is not related to the increased risk of the posed arterial thrombotic events by an MPN. This doesn't sit right with me as this history is hugely decisive in the treatment algorithm for MPNs I. E. my understanding is that any previous thrombotic event (venous or arterial) puts an MPN patient in a high risk group (I have based this on a relatively recent journal by Dr.Teferi)?! Any comments would be most welcome.
Previous venous thrombus as risk factor? - MPN Voice
Previous venous thrombus as risk factor?
I agree that your previous PE should be considered a risk factor. Do you know how long your platelets have been elevated?
Thank you for replying. Yes, that's what I thought. Perhaps I'M wrong but I thought that a previous thrombotic event (whether venous or arterial), regardless of whether you were diagnosed with a MPN at the time or not, was a risk factor once actually diagnosed with an MPN?! . I'm lucky that my platelets are just over 500. I don't know what my platelets were unfortunately when I had the PE. My GP pulled my paper file out of archives to have a look but there was no record of platelets. I have an excellent GP (who doesn't know much about MPNS) who is happy to do tests within her protocols and quickly referred my to haem. With my platelets the way they are I wouldn't be keen at this stage to start cytoreductive even if I was deemed high risk BUT I would feel better if the haemotologist was on the same page as me based on what I've read. I would have a preference for anticoagulants and aspirin though once I'm diagnosed rather than just aspirin as she indicated (even if I'm triple negative) . Still, I'm awaiting CALR and MPL which could change her view (especially MPL) and of course the BMB.
Hi you are right to consider your past medical history making you high risk. Thus being given medication despite your age being the norm. However I had an ischemic stroke at 50yrs and diagnosed at 60 with Calr ET. They weren’t connected. We know this because just weeks before the stroke I gave a large blood sample to cancer research. After ET diagnosis that sample was retested and I didn’t have the mutated gene. I would hold tight and see what your consultant decides to do regarding your treatment. Then question that decision if you feel it nesscessary
Keep a copy of your blood test results I do.
What is your current platelet count?
Hope the bmb goes well for you.
If unhappy, voice your concerns on this site again.
Loads of support will be given.
Hello, thank you so much for replying and I'm sorry to hear about what you've been through. Whilst unconnected, have they said that due to your previous thrombotic event, that this puts you at higher risk?
I've responded to clubdino on this thread with my platelet counts and thoughts (right or wrong! ) - not sure what you think?
Yes, I've got a spreadsheet with my blood results 😁 - I have a degree in biology from years ago too which means I do dip my head in academic journals but I'm not sure how helpful it's being. Sometimes ignorance is bliss; although I don't believe that in this scenario. I was told 2 weeks ago following my JAK2 negative test that I would have to wait 26 weeks to see a haematologist so I took it upon myself to email an MPN specialist with my thoughts and to ask for a private appointment. Unfortunately, he doesn't do private work but he emailed the haemotologist I'd been refered to in Oct 2018 and hey presto, I'm seen in 2 weeks!
Thankfully from this wonderful website, I've seen how stressful it is for so many along the diagnosis pathway for an MPN due to the rarity of the situation. This site has helped me feel like I'm not alone! Sometimes it's easy to feel like you are going stir crazy analysing everything!
Thanks again.
Yes I was immediately put at high risk. Also my blood was tested for mutated genes. Can’t understand why yours was just checked for Jak. Where do you live?
Glad your quest for a heamotolgist came through for you.
Good luck.
Hi sorry for the delay. I've emailed a few well regarded people in the World of MPNS who have been good enough to respond. They feel (without knowing my platelet levels at the time of my PE 20 years ago that it is not connected to the potential ET so I wouldn't necessarily be classified as high risk on this basis. I'm still awaiting results if MPL and CALR which could change things. Perhaps then you were diagnosed and treated as high risk purely based on being diagnosed at age 60 not on basis of you previous thrombotic event? This concurs with the risk stratification guidelines.
I'm in Wales, UK.
Thanks for replying again.
Eve
Definitely because of stroke I was classed as high risk ( two indepeNdant he amp said so. I live in Yorkshire but hail from near the Gower. Did you watch the game yesterday?
Hello, thanks for your honest reply. Sometimes you go around in circles reading about MPNs. Well, I'm going to wait for the results of my last tests and then I'll be rather persistent yet again. I don't give up without a fight easily (Welsh blood! Scuse the pun)
The gower hey - lovely part of the country. I'm hanging my head in shame - no I didn't! I think the rest of Wales probably did! Did you enjoy it (I don't even know the result) 😊
Just had to google MPL. Wasn’t familiar with that term. You learn so much on this sight. Good luck
Hi, I had a cerebral venous thrombosis which led to my MPN diagnosis. It was definitely caused by high platelets. I suppose it is impossible to prove what caused your thrombosis at 18 as it happened a long time ago, but equally I don't see how your doctor can dismiss it as unrelated. I was put in the high-risk category as I understand any previous thrombosis will do. Wishing you good luck and hope you get a chance to see an MPN specialist.
Kind regards, Cecilie
Hello, thank you for taking the time to respond. I'm sorry to hear about what you've been through - it must have been an incredibly challenging, stressful time.
I can completely understand your high risk category given the circumstances. As I've replied to others on my thread, I thought that a thrombus no matter whether venous or arterial and no matter if it was a diagnosed MPN at the time or not, this would put me in a high risk group. I think ultimately they will not know if my PE was because of high platelets back then or not. Whilst I want to be it put in the correct risk group, I don't think I would take cytoreductive therapy until my platelets increased even if recommended. However, I would welcome the extra anticoagulants that are recommended for high risk group. I guess feeling that you are being put in the right risk group gives you reassurance that you will undergo the correct monitoring. I'll wait for the final verdict once all tests are back.
I assume that you were recommended cytoreductive therapy? It's interesting as the haemotologist talked almost as if arterial thrombus was the most prevalent risk in MPNS and seemed rather unconcerned about venous complications. Perhaps on the first consultation they try to not over complicate things. Unfortunately, Iike the detail!
Thank you 😊
Hi, yes I was put on interferon as my platelets were around 1000 at the time. I have not heard about this distinction between arterial or venous thrombosis in this context before, I assume they would want to avoid both? Good luck with your tests and next appointment, hopefully your previous thrombosis is taken into consideration.
Hi thanks for replying.
Yes, you would definitely think they would want to avoid both and I'm sure they will. It just seems that aspirin doesn't seem enough. I guess I just need to put faith in the medical professionals. However, the NHS always (and rightly so) looks to balance risk with cost. Unfortunately, a patients perspective is somewhat different. I'm going to research a bit further as I would feel better being on anti coagulation therapy if this reduces risk further. I will try and push for it if this is the case.
I've replied to Wyebird on this thread regarding what I've been loosely told about my previous PE and associated risks. Looks like this may not put me in high risk group hence just aspirin as potential treatment at this stage (subject to further mutation tests and BMB)
I hope the interferon is agreeing with you.
Take care
Eve x
Hi I am Jak2 negative and am lucky enough to have a great Consultant who specialises in Polycythemeia. The only medication I have currently have is 75mg Aspirin daily plus venesections every 6 weeks apart from recently I have 2 since December 2018.
What I have noticed since December last year though it my itching has got a lot worse for some reason and an increase in headaches. I have a further appointment with my consultant next month so hopefully he may have some answers. I am due another Bone marrow Biopsy soon he said so not looking forward to that. 
I cant complain though as I was diagnosed in 2011 and I am feeling good most of the time and it does not effect me in my Job so I am thankful for that. It was my polycythemeia consultant who noticed a DVT on my leg after my local GP failed to spot it twice when I went to see him even though my records would be highlighting my Polycythemeia.
Wishing you good luck and remember you will always get support on this site.
Hello, a big thank you for sharing.
That's truly incredible that your GP missed the DVT, PV aside! Can you change GPs?
I've noticed increased allergies too (I'm. Already ruled out from PV) - can you take antihistamines for relief?
It's really positive that it's not affecting you at work - may it long continue for you. I'm lucky and I can't complain too much - I do get fatigued though but I'm fortunate to have an incredibly flexible job so I can work around it. To be honest, the stress of this transitional time to a diagnosis is very stressful though and it's consuming me a bit! It's very frustrating as I'm quite a pragmatic person when I need to be - I guess I don't like not being in control as will be true of so many others in this situation
Good luck with the BMB. I appreciate it can be very uncomfortable but at this stage I'd feel happier knowing that everything is being looked into. Goodness knows how I'll feel when it's being done! Did you take extra pain killers before the BMB?
Take care
Eve
Hi, my diagnosis is ET JAK2+. I had a cerebral venous thrombosis whilst on aspirin twice weekly. I then commenced hydroxy and apixaban (which is a relatively new anticoagulant) and I’ve taken both ever since and will continue to take both unless blood results change at which point I will have a BMB. My platelets have only ever been up to the high 500s and now sit around 400. Best wishes, Merry
Hello Merry
So sorry for delay - thank you for sharing. I'm so sorry to hear about your thrombotic event - it must have been incredibly stressful. May I ask please how old you were when that event happened?
Your post is hugely concerning to me as the way things are currently, once I get an ET diagnosis (following no further concerns from BMB and CALR, MPL results) it looks like I will be deemed low risk as they don't believe my previous PE was ET related therefore I will be put on aspirin alone. Aspirin alone just doesn't seem enough in my opinion to reduce risk. I'll will feel like a ticking time... I would much prefer anticoagulants as well. I notice that your platelets weren't excessively high either - I've read that there is not a direct correlation between platelet levels and risk of clots.
Thank yiou
Take care
Eve x
I definitely believe it is a risk my first symptom was a brain clot and am very high risk.Hope you can gather info to show him otherwise a second opinion is your right.
Hello, I'm so sorry to hear about what you've been through. May I ask - was your thrombotic event linked to your MPN ie if you have ET (for example) were your platelets elevated at the time of the event?
Eve x x
Hi there have been off line for a while, yes my clot was attributed to my disease and then ET was confirmed.
Hi there,
I went to sleep and woke up with head pain platelets 2,000 after some tests ET was diagnosed.
JAK2 V617F Allele Burden and Thrombotic Events in Patients w/ JAK2 V617F Positive PCV/ET @ High Risk of Thrombosis
Preparation for long flights?
ET on aspirin alone high risk or not?
Anyone else had liver damage - and what was the cause - wrongly diagnosed?
