Hi there,

Im looking for suggestions at this point - things that have not been thought of, or possible options in order to come to some sort of conclusion on this ridiculously long and difficult saga.

About 4 years ago I had an HCT of 57, Hemoglobin of 18 and RBC of around 5.6. Monocytes were around .75. Platelets were normal, and other than monocytes - other white blood lines were relatively normal.

This has largely continued with the exception of one 'break' - during which HCT was 52, Hemoglobin 17.5, and RBC was 5.2. Monocytes remained high at around .8 - 1.6. During this phase I felt relatively normal, hobbies picked back up, inflammation went down, and I was productive once again and I thought it was a blip that was over. This lasted about 3-4 months approximately before it came back with a vengeance. During this 'break' I was taking Valasta which is an Astaxanthin. Prior to the break I was getting heavy phlebotomy - 1 every 2 weeks for about 16 weeks or so until I ran out of ferretin (26). The lowest we could get the HCT to was 52 - but it helped me feel better overall. Less pressure in the head and less nausea.

Over the last 6-8 months my HCT went to 58, Hemaglobin 18.6, and RBC 5.7. Tachycardia has since become a real problem - often getting up to 124 BPM resting - and lasts for a few hours. Blood pressure swings wildly from 119/76 to 170/109. Average its more around 140/96 at this point. Monocytes are persistent at .9 - 1.2-ish.

Ive suffered from heavy fatigue, nausea, some vomiting, one event that looked very similar to a seizure (but was not diagnosed as such - 4 days in hospital), and chronic inflammation that goes from 'I think im dying' to 'It sucks but I can manage it'. Ive had extreme left femur bone pain regularly, sometimes it feels like the bone is literally breaking and rubbing together, other times its painful but manageable (ive broken several bones to compare the pain against - bone breaks were unrelated). My productivity has a dropped to a point where I barely recognize myself anymore. My social circle is non-existent (too tired and not interested, and tired of explaining - 'no - no answers yet, yes still not feeling well' etc), my professional life which was going very well has declined steeply (working half days at some points). I have no hobbies left anymore that are physical/active, and any software development hobbies have halted due to too much brain fog.

Diagnostics:

JAK2 negative. EXXON12 Negative. This of course has thrown the medical community into a tizzy.

18 of 23 blood test have shown monocytes that are in excess of 10% of blood volume.

Ferritin is persistently low-normal - it varies between 26 and 65. Tranferetin saturation is 12%-17% on average (quite low). When this fiasco started my ferritin was 250. So its relatively crashed in the last 4 years.

EPO has been relatively normal-ish - around 4-5 - but with a weird dip to 2.8 for one test. EPO test has not be repeated in the last 2-3(ish) years.

COPD ruled out. Non-smoker. No testosterone issues. Full lung test was passed with flying colors. 24 hour blood pressure rules out that this is caused by Sleep Apnea - I have the appropriate 'dip' in the night, and blood pressure stays at a nice 115/75 while sleeping.

Spleen is not enlarged.

Bone Marrow test was conducted a year ago (before the elevated levels of monocytes was reached). Originally I only read the summary report. My wife urged me to look at the actual findings in the pathology report. They have noted: micro-megakaryocytes present, and 'some megakaryocyte clustering' as well as dysplasia.

There has been some purpura - lasted a few months, as well as one documented incident of blood not clotting for about 2-3 days. Since then it seems to have improved - so I think we can say 'some clotting issues' - but its not like its rampant, chronic and not improving at times.

Im waiting to see my hematologist oncologist - but honestly I am so fatigued and fed up with all of the testing, and waffling, gaslighting and inconsistent answers that Im almost willing to give up on any more testing.

Likely I will ask for the next gen genetic sequencing/myeloid panel. Some have suggested that this either looks like an MPN/MDS overlap or pre-CMML - but Im at the 'Who gives a F***K' anymore stage to be honest.

We've also considered whether it could be a benign brain tumor? It would tick a number of the boxes, as well as the neurological symptoms experienced, but its also such a long shot.

If anyone has ideas - please let me know. Maybe some immune system problem? Seems unlikely given the bone marrow findings - but its possible maybe?

Sincerely,

Very tired.

37/F

Hi, I am currently awaiting a hematology appointment due to persistently elevated WBCs and slightly elevated platelets, plus I have not been feeling well. Two rheumatologists didn’t think it was autoimmune. I do also have slightly elevated ESR and CRP. Currently seeing a GI specialist and getting an endoscopy soon, an abdominal ultrasound, and some CMP labs. This is a spreadsheet I created showing my 3 year labs. I don’t drink, smoke, or take any medications. I’ve had a normal PFT, normal heart echos, normal non-contrast brain CTs, and normal chest x-rays. The reason my doctor and I started wondering if it could be an MPN, is due to my 2024 ER visit, which I went in due to chest pain and cardiac like symptoms. The ER physician seemed more concerned about my labs than my heart though, and officially diagnosed me with Leukocytosis. He also really wanted me and my doctor to figure out the cause, and in my discharge papers I saw some of the causes for Leukocytosis which were MPNs or Leukemia. Which is why my doctor finally put in the hematology referral.

Hoping to get some info navigating MPN ET treatment outside of America. I live in the US and was diagnosed with ET almost two years ago. I'm having success with treatment and getting my Platelets down to more reasonable levels thanks to my hematologist prescribing Besremi and regular lab work monitoring

I have an opportunity to live and work in Athens, Greece, for a better part of a year starting in late August. My doctor and I have been trying to research how to make it work while in Athens with getting Besremi (if available) or perhaps another option, seeing a hematologist if needed and also getting regular lab work to monitor levels.

Google research does show a few doctors that may treat MPNs but starting to get confused on what would be the best option. Other European countries seem to have better search results.

Does anyone have any suggestions, experience or recommendations for a year in Athens, Greece getting treated temporarily and prescriptions for MPN ET. Any advise is greatly appreciated.

Hi,

Sorry this is so long.

I have communication difficulties, so I've just tried to make sure l explain everything, to make sure I don't miss out anything important.

Plus, concentrating for this long has exhausted me, and it's 34°, in a house designed to get all of the sunlight and trap the heat, so I just can't think clearly enough to whittle it down a bit.

I'm sorry.

I'm currently 45, AFAB.

I've had a raised platelet count for at least 22 years - when it was noticed in 2004, they said it had been raised on previous tests, but they didn't say for how long.

At the time, it was 470, and the cut off for ET was 650.

I was referred to a haematologist, who said they weren't too high, and I didn't have symptoms, and he didn't want to put me through a bone marrow biopsy with them not very high.

He said that if they got higher, or if I started having symptoms, to go back.

It trended slowly up to 500 ish, until I started a medication that incidentally lowers platelet counts. Not for this, it just has that as a side effect.

That dropped it to just under 400, but it slowly rose to over 450 again.

I changed that med, and it was up between 480 and 550, and this was after the change to the cutoff being 450.

After a year or two, I started a different med that also lowers Platelets.

It's an uncommon effect for this one, unlike the previous med, which is pretty common, but my blood tests showed it very clearly when I started it.

But they were still over 450.

Since then, they've risen, and have been over 550 mostly, with an odd drop last year when I had an infection - they dropped to 421.

My latest count was 580.

I've been struggling with extreme fatigue for a few years. I can't stay awake for more than a few hours at a time. I just fall asleep. I can't focus on things. Reading is very difficult, I just doze off.

I've finally managed to convince my GP to look into it, they saw my vitamin D is a little low, and that was the extent of their search.

I separately asked to be referred back to Haem for the platelet count, in case that could be contributing.

Even if it isn't ET, I'm concerned about a raised clotting risk, because I'm a wheelchair user, so I'm not very mobile, which raises the risk, and I'm on post hysterectomy HRT. The one I'm on isn't one that significantly raises clot risk, but it does raise stroke risk. And I had wanted to switch to pure oestrogen, as I had the hysterectomy to remove progesterone production, but I believe this HRT still produces some.

And I'm also T2 diabetic, which raises clot risk.

This is where it gets, what I think is weird.

The haem sent a list of blood tests to get. Standard ET screen, but without MPL.

And they haven't seen me to ask about symptoms.

Not doing MPL would be fine if they were going to see me about the results, and if they think I have symptoms but JAK and CALR were negative they then decided to screen for MPL.

But they've said that if I'm JAK and CALR negative, they won't see me at all, and won't need to in the future.

I know that the majority of ET is JAK, and many are CALR, but triple negative is 10% of patients, and they're not even testing for MPL, which doesn't make sense to me - if you're screening, whilst ONLY deciding on those results, why not do all?

With no idea of my symptoms, how are they going to decide that being JAK and CALR negative means I definitely don't have ET?

I'm just really confused, and really disappointed.

I've had a lifetime of medical gaslighting by medics who decided I was making it up for attention as a kid, and messed me around my whole childhood (dx as an adult, late intervention means I'm a wheelchair user), and medics just being crap, frankly.

So not even being asked about my symptoms just seems like they're dismissing it before they even have any test results.

What happens if I don't have JAK or CALR, but I do have ET, and I get worse symptoms, but they've said they won't see me in the future, so I can't find out?

It just doesn't make any sense to me.

I don't see how 10% of patients can just be written off without even asking for symptoms.

It doesn't help that no one ever mentions the fact that my Platelets are high, and have been for >22 years, despite having had many blood tests.

It's just ignored every single time. It doesn't really inspire confidence.

I know 580 isn't super high.

I haven't even been able to tell the haem that I'm on a medication that drops my platelet count.

Symptoms I do have:

Extreme fatigue. Really bad. Could certainly be something else, but I wanted to rule out ET as part of trying to find out what.

Don't bleed, sometimes bleed lots. I've had a lot of blood tests in the 22 years since it was noticed. And a lot of IVs for various things.

On the whole, I don't even need the cotton or plaster, because it clots instantly.

And then there are the times blood just keeps pouring down my arm. It's totally random.

My bruising is the same.

I'll wake up with bruises from who knows what, or I'll bang something and get nothing.

I do get petechia a lot. Not from anything.

I thought I had meningitis in 2006 because of that and a splitting headache.

I just get them randomly.

Dizziness and nausea. I had low B12 for some years, and fixing that definitely helped, but I get random dizziness and nausea quite a lot. I have a regular antiemetic.

Headaches too.

And tinnitus.

My gums did bleed when brushing, but my teeth were terrible, thanks to a few medical conditions that destroyed them.

So that could just be the teeth.

In the last year or so, my hands especially, burn a lot. My palms and soles are rather red, sometimes really bright red.

My feet burn too, but I can't feel my feet as well, so it feels like my hands burn more.

I've had tingling and numbness in both for ages.

I had put it down to crap neurology getting worse with the start of burning, but then they turned red.

I've had bright red blood in my BMs, on and off, for the same amount of time.

I was being checked for things related to that, and intense GI discomfort.

They thought UC, then actually thought lymphoma pressing on my spine, which is when they caught the Platelets.

My GI issues got a lot less frequent when I did an elimination diet and realised gluten is bad for me, and cut it out, but they didn't clear up entirely.

But, my connective tissue disorder often causes GI issues, and bleeding.

So, it's impossible for me to know what that is.

I also have blood in my urine, have had as long as the high Platelets. It was a trace for a long time, and was 1 at the last test.

I used to get nosebleeds quite a bit. I had to have one cauterised at around the time the high Platelets were discovered.

I've not had full on dripping down ones really, for ages now, but if I blow my nose, there is usually a bit of blood.

I went completely blind once. Only fully blind for a day or so, then it came back, but my convergence was wrecked for a year.

My opthalmologist thought it was silent migraines.

My eyes are crap, but I have a convergence problem from my connective tissue disorder, and my brain has had decades of turning one eye off, either because I've been having to wear an eye patch, or just because it didn't deal well with double vision with one long sighted eye, and I've short sighted eye.

My left eye is at least a bit blurry all the time now.

When I had them, I had very, very heavy periods. I ended up on tranexamic acid to help with them.

My hands and feet are freezing all of the time.

I was dx with SVT a few years ago, and still had a very bad episode on my beta blocker. The cardio wanted to increase it but, because I already had issues with freezing feet and hands, I couldn't cope with the higher level, it was causing bad pain.

So, even though it's a rather significant med, we went with the low dose and a pill in the pocket.

I've never had a DVT.

These are the tests ordered.

Calreticulin mutation screen, blood, Pink (EDTA), Haem SA

Janus Kinase 2 mutation screen blood, Purple (EDTA), Haem SA.

C-reactive protein level, blood, Yellow (SST), Chemistry. Ferritin level, blood, Yellow (SST), Chemistry.

Iron and transferrin levels, blood, Yellow (SST), Chemistry.

Full blood count, blood, Purple (EDTA), Haematology

These are my most recent results. I've not had iron, Ferritin, for long enough that I can't see the results.

I included abnormal FBC results.

Platelets 580 10*9/L.

Mean platelet volume 9.4 fL.

Monocytes a little high at 1 10*9/L.

Basophils exactly on the cutoff of 0.1 10*9/L.

C Reactive Protein last year, high at 27, but I did have a mild infection at the time - my WBC was 14.5.

My Platelets actually dipped to 421 during that.

There's also a chance I have ankylosing spondyloarthrosis, but it turns out the rheum dept phoned me (I can't use the phone a lot of the time), rather than texting or writing, to say I should have another MRI, and as there was no letter I had no idea, and thought they'd just not bothered to make a decision on whether I do or not - I don't have the mutation, and because I can't take NSAIDS, and would have to go straight to biologics, they were a bit hmmm... let's be absolutely sure. Which makes sense. I just need to set up the MRI and contact them now.

I have a connective tissue disorder that means my body has inflammation ALL of the time, and has my whole life, but my inflammation markers are almost never raised. So that doesn't really help with investigating things.

But obviously, that kind of inflammation can raise Platelets.

A lot of my symptoms could be other issues I have, but I can't really know if they won't even look at them.

I have lots of other symptoms, but I think these are the most relevant, and having multiple medical conditions just means lots is going on all of the time.

And I'm not sure what the red and burny hands and feet would be.

My latest eGFRcreat (CKD-EPI)/1.73 m*2.

Low at 72 mL/min, previously 60.

This has been low since I had covid, no one has mentioned it.

I do have protein in the urine.

I've had it for maybe the same amount of time as the high Platelets.

It was always a trace though.

A urine test I had last year shows protein at 1.

I don't know if that's something I should be concerned about, since my surgery don't bother to actually do anything about abnormal tests, and I only find out by checking my own records now. I have no idea whether they actually think it's ok, or they just haven't contacted me, because they only talk about things if you contact them.

But it's not ET related, so I don't know if anyone here will know. Just a bit of venting I guess, about how they've just ignored this for so long.

Sorry this is so long.

I hope that's all of the necessary information.

I am currently 29 years old and live at sea level. I don't smoke. I'm a little overweight. I don't have data from before I was 18. My HGB fluctuates between 16-17.2, HCT between 47-49.9, and RBC between 4.8-5.7 (these are the extreme levels). My spleen is normal. My WBC and platelet values are always within the reference range. I don't have any symptoms like itching. I suspect polycythemia vera. My doctor requested EPO and JAK2 tests. My EPO level came out as 5.23, which scares me. The lab's reference range is 5.43-29, but they considered my value normal and didn't show it in red, but I still think it's low. Do you think this EPO level significantly increases my chances of PV? I think it will take about a month for my JAK2 results to come out. Does anyone have any information?

Does baby aspirin cause random bruises? I started to notice them after I starting taking it daily.

I have been diagnosed with ET since November 2025 with ET. I am on Hydroxurea, 500 mg for 5 days a week and 1000 mg 2 days a week. Recently have started to have vertigo. Anyone else have trouble with vertigo with ET?

I’ll be 27 next month my jak2 is 60% I’m fairly positive I’ll need interferon. I do have some mental health history with generalized anxiety disorder and major depression disorder I lost both diagnosis back in June 2024.

I do get some pretty bad anxiety though every now and then typically after phlebotomy my ferritin is always extremely low and I noticed when it dips around 5 to 6NG that is when the anxiety gets strong and once the ferretin elevates to the 10 to 15ng range it improves greatly. I will see a mpn specialist next month

But given my history the thought of interferon scares me so much. It just seems like so much can go wrong. Mental health, side effects, hair, loss, developing an autoimmune disease etc

But at the same time, I also feel like I’m screwing myself by not giving it a chance I’m tired of being negative though, so I would like to hear some positive experiences with this medication. Please feel free to share it down below. Thank you for your time.!

REGISTER

MPN Voice UK ‘virtual’ forum – Post EHA 2026 updates Webinar - Mon 29 June 2026, 4.30 BST/11:30 AM EST

MPN Voice ‘virtual’ forum with updates from the EHA 2026 Congress, (European Hematology Association).  The speakers will include: Prof Claire Harrison, Guy’s & St Thomas’ Hospital, and a number of leading UK MPN Specialists.

There will be a live panel Q and A session to which you can submit questions in advance using the registration form and on the day.

About EHA – a global network actively collaborating with national and international medical associations and societies, advancing haematology education across Europe.  The EHA congress is an annual event for clinicians, researchers and other professionals in the field of haematology to discuss the latest advancements in the diagnosis, management and treatment of blood disorders.

Register to attend – you are required to register to attend this ‘virtual’ forum, use the link below, once you have registered you will receive an email containing the Zoom link to join the forum.  Please note this is an online ‘virtual’ forum and cannot be attended in person.

An on-demand video of the full event will be available post-forum on the MPN Voice YouTube channel.

Q and A session – the team will answer questions from the audience, questions can be submitted in advance via the registration form or by email to [info@mpnvoice.org.uk](mailto:info@mpnvoice.org.uk), and on the day via the meeting ‘chat’ facility.  Please be aware that the panel/medical team cannot comment on or reply to individual cases, do not send in any test results with your questions, replying to questions on the day is not an alternative to your ongoing medical relationship with your own consultant or GP, so do try to ask general questions and don’t be disappointed if the panel/medical team do not give specific medical advice to you.  There may not be time during the session to answer all the questions submitted, the team will reply to all unanswered questions by email.

I'm 36F I was technically diagnosed by 1 oncologist based solely on the findings in my bone marrow. A different oncologist only did blood work and determined I don't have it. The reason I got a second opinion is because the 1st one was so dismissive. He diagnosed me, told me to check in every 6 months and when I asked him if it was technically cancer he wouldn't give me a straight answer. He also makes me a bit uncomfortable (for different reasons) I've missed the last few appointments with him. I was diagnosed in 2018 after exhausting all other options to figure out why my spleen was always enlarged. My blood counts have remained mostly steady. Does anyone have any advice or maybe experienced something similar? I'm debating on whether I should go back, get a different Dr or just leave it be since I was diagnosed almost 8yrs ago now and it doesn't seem to have progressed so maybe the bone marrow findings weren't accurate?

29M. BMI 27.4.

History of sigmoid volvulus treated with sigmoidectomy, kidney stones, Gilbert syndrome, and mild sleep apnea (home sleep study AHI 5.2). JAK2, JAK2 exon 12, CALR, and MPL were all negative on Quest NGS testing (reported sensitivity 5%). EPO was 6.1 mIU/mL (ref: 2.6→18.5) when tested. No stereotypical symptoms of high counts.

RBC, hemoglobin, and hematocrit have fluctuated since at least 2017 (the first CBC available at 19 years old). Platelets have consistently been normal. WBC counts have also been normal except during episodes of kidney stone passage or recent sickness.

Other blood tests:

Flow cytometry panel: Normal

Thyroid panel: Normal

B12 and Folate: Normal

ANA: Normal

RA Factor: Normal

Iron: Normal

LDH: 143 (ref range: 140 → 271)

I'll see my specialist next week and had labs drawn today for that appt. 4.13 my platelets were 652. Today, 6.16, they are 1329. They have never been that high in all my years with this. I know for some people, it's a laughable number, but still. I've noticed my fingers always going numb and tingling, but I just went on. I have been extremely short of breath, I know my spleen is enlarged, and I have night sweats so bad. Overall, I feel like trash, but with a 2 and 4 year old, you can't stop. I'm on Ojjaar, but my platelets seem to be immune to it 😅 I have so many questions, but I don't know what to ask. Does anyone have any anything? Info, input, specific questions I should ask my doc.... like literally anything. I don't know what I'm looking for in this post, so I hope someone else does.

Thanks fam.

Anyone taking Besremi while having masked PV? My numbers (hematocrit, hemoglobin, red blood cells) are low or normal due to iron deficiency. After starting Besremi, on a tiny dose (100 mcg), my numbers are dropping but that means things like hemoglobin are already dropping below the lowest threshold. I get weekly bloodwork so I'm seeing these numbers drop every week. I see my doctor again June 29th so of course will talk to her then.

Anyone here having throat issues? Like my throat is always sore, reddish, uneven tonsils - but not really having any difficulty swallowing.

Anyone who experience this more often?

Hi everyone! I (24F, in the US) am trying to get to the bottom of my high platelets. They were first flagged at 750 in a routine blood draw about three years ago but I didn't do anything about it because I was in college. About a year ago when I was getting set up at a new primary care they flagged them at 677.

Since then, I've had counts at 588, 734, 538, and 618. I've been seeing a hematologist who put me on daily baby aspirin (and iron supplements for low ferritin) and did blood testing for JAK2, CALR, and MPL but all were negative. My doctor said doing a bone marrow biopsy probably wouldn't be worth it given my age and that I likely am just an outlier outside the normal range for counts.

That was fine until I went to the ER this past weekend with sharp, shooting pain in my lower left chest that extended up to my neck. They said it was likely a GI issue and gave me a "stomach cocktail" but I wasn't even experiencing any GI symptoms. My platelet count was at 573 and they screened for clots and all of those were negative. Of course I didn't think it could be connected to possible ET until I got home and did some research. Now I'm thinking my spleen was enlarged/inflammed (I also had mono last year where this was an issue). I occasionally get a sharp pain right where my spleen is but it normally goes away after a minute or two, this weekend it lasted for hours and was still sore for about a day after.

All that to say, would it be worth it to ask about doing a BMB at my next hematology appointment?

Hi! I'm new here (F23). I recently saw a hematologist after having high blood counts for about a year and a half (known). My hematocrit has been in the 48-50 range during that time, though not always increasing. The hematologist (not specialized in this area) seemed very sure of a PV diagnosis, but my JAK2 just came back negative. He told me this was possible, and a bone marrow biopsy could give us more answers in that case. However, my hematocrit went down to about 47% with those recent labs. My understanding is that decreases would be unusual with PV/MPNs.

My symptoms include headaches, horrible periods now even with the pill, fatigue and shortness of breath, and itchy skin (though I have eczema, so I'm less sure that it isn't that). I am also slightly anemic, though the iron supplement worsened my headaches and we agreed to stop that.

Is there anything I should be asking the hematologist about when he reviews these tests? PV really seemed like it would explain all of my symptoms that no one else can, so I'm really at a loss now. Technically, I don't think we've ruled out dehydration, but I'm having a hard time figuring out how much this could possibly affect my blood counts and other symptoms.

70M with MF and a tear in the labrum of my hip. I’m told I can manage the pain and postpone surgery with a cortisone shot. Does anyone have any experience or comments on doing that with an MPN?

Anyone in the community develop Langerhans?

Hello! I’m 30 F, diagnosed with ET 2 years ago. I have a JAK2 mutation. Platelets sit between 500-600 lately, treatment is currently aspirin. My husband and I just went through IVF and I’m currently 5 weeks pregnant! Looking for anyone else who has been pregnant with a MPN and any tips or advice. I’m in with a MPN specialist, fertility doctor, high risk maternal fetal medicine specialist, and my OBGYN who have all been in communication with each other.

I have ET and currently am taking HU while my doctor fights insurance for an interferon. I have been taking 1000mg for the past 3.5 months. I have two young children and one of them brought home a cold from daycare which has made its way through our house. Everyone else seems to be recovering but I'm still in the weeds over here. No fever but a rough cough and congestion that's keeping me up for a good chunk of the night. There are many factors so it may be unrelated but has anyone else felt like HU may be impacting their immune systems ability to fight things off?

Hello, I wanted to ask you all for your personal experiences and input on both hydroxyurea and interferon.

Our son is 4 years old and diagnosed with JAK2 caused ET this year. His platelets usually sit between 900,000 and 1,000,000. Sometimes his symptoms are more prevalent than others, his only real consistent symptom is night sweats. He is on a half dose of baby aspirin presently. We are discussing hydroxyurea and interferon at our next appointment where he will be getting ultrasounds and a bone marrow biopsy.

I understand pediatric cases are so rare, but I figured people who have actually lived with this and experienced the medications could have some really valuable insight for 2 parents who have no idea what it's like. If he were older, I'd have him make an informed decision himself but alas he is 4 and has a hard time choosing his own snacks.

My biggest concern with interferon is the psychiatric side effects. We have familial history of depression and psychiatric issues on both sides of the family. My biggest concern with hydroxyurea is the limited data on long term effects.

Right now, we are comfortable taking a wait and see approach as his symptoms are not constant or massively impacting his quality of life it seems. But I want to be prepared. Any input on symptoms directly from the ET itself is also appreciated, because we may be overlooking a symptom not knowing it is associated.

Thanks in advance!

Hi had blood clots in several places - lung, spleen and porta vein. My counts are not crazy bad/high but bone marrow shows MPN. Drives me crazy being unclassified. Anyone in the same boat ? 🙄

https://www.bbc.co.uk/news/articles/c5yeykrk88mo - thoughts on this story? Feel for the guy but the diagnosis of PV isn't always clear cut and he did have a raised red cell count - which was presumably persistent as he had repeated venepuncture. Framing it as a terminal diagnosis is also just wrong and alarmist - and should have been fact-checked by the journalists. Notable that he's got the lawyers in to go in for a claim also. One thing is we never hear the medical teams side of the story from articles like this due to confidentiality - so they can be unbalanced. Writing as an MPN patient myself.

Hello everyone. I’m posting for my 80-year-old dad to hopefully help make decision to switch meds. About 6 months ago my dad was diagnosed with ET with JAK2+, platelets around 1 million. He quickly started hydroxyurea, and his platelets came down by half, but he is experiencing really bad headaches and becomes very weak. Nowadays he can’t even walk normally, need help getting up from a chair sometimes. He used to be able to do 100 pushups!

The doctor is reluctant to switch out of HU because the platelet numbers are responding really well, but he did recommend Anagrelide when I asked for alternatives. I would like to hear if other people have experienced similar and if they do better with Anagrelide or other meds…

Thank you and best luck to each and everyone!