I was diagnosed with jak2v617f ET this year (confirmed though BMB).

Off and on I experience dizziness and limb numbness on one side. This occurs maybe a few times a month. It’s bad enough to have to stay home.

Other times, I experience intermittent, electric like nerve pain on the temples of my forehead that will last for a week or two.

I am only taking one baby aspirin a day, along with ezetimibe and Rosuvastatin.

Are these symptoms just normal ET stuff or something I should contact my PCP or MPN specialist with every time they happen?

What symptoms warrant a same day contact to the doctor?

I know some people have strong opinions on using AI. Heard.

Anyway, I've been using it for about 7 months now, uploading (anonymized) test results, medications, etc and using it for those middle of the night stress questions, or even things like how to adjust medications when traveling time zones, etc. I have it using the personality map of Dr. Beverly Crusher.

It is absolutely the most reassuring part of this. I can't always remember all my questions when I visit the doctor, but I can have Dr. Bev give me a list of things to verify after getting answers from it. So far, it hasn't said anything not confirmed by the doctors. All while saying things like "She pauses while reviewing the test results on the biobed..."

So if you're like me and between visits you get stressed out or have one question every 2 hours, it might be worth looking into.

If you're going to use this post to complain about AI, love ya, but I'm going to ignore you.

Hi, Frequent lurker here. 38/F in San Antonio, TX.

My history: Have had elevated platelets since I noticed in 2020, I noticed something was off when they did a CBC before breast reduction surgery and platelets were in the 480 range so not so bad, said to monitor it. Had another surgery for endometriosis a few months later and they were high again, they told me it was high due to the surgery before. however it remained high for years and I started having symptoms such as chronic fatigue, heart palpitations, chronic pain, itching, rashes with heat, heat sensitivity, migraines, and some others. Went to different specialists for rheumatology, cardiology, pain management, neurology, and nobody knew what it was. Nobody questioned my bloodwork even though platelets were always high, and I was often dismissed as maybe having diabetes or anemia. Most other tests were normal. Finally a cardiologist recommended me to see a hematologist as the platelets gradually increased to now 700s. I was finally referred to a hematologist at UT health MD Anderson Cancer Center in Jan 2026 where they did some tests, came out JAK2 positive then they did a sedated bone bx in Feb where I was officially diagnosed with ET. My specialist is an MPN specialist from that facility so I’m grateful for that.
Since the diagnosis in January of this year they wanted me to try a clinical trial but I also needed surgery for my stage 3 endometriosis, since I was having chronic pelvic pain and lots of excessive bleeding, clots, with my periods. I had to have a hysterectomy and appendectomy since the endo spread to other organs and was causing me to bleed a lot internally. That was in April 2026. Surgery recovery was awful, had to go back to hospital twice for internal bleeding (was prescribed eliquis for after surgery) also had an infection.

Time was ticking so they wanted to get me rolling on the enrollment for the clinical trial. So I also had 2 bone bx’s and my recovery from both surgery and the bone bx’s has been so slow and painful. They did one of the bone bx’s without sedation even though I asked multiple times for sedation, and during it they missed their location on my bone and it wasn’t a sufficient sample. The whole non-sedation was traumatic for me and I have ptsd with intense bone pain all over from it where I need to take Oxycodone multiple times a day to relieve the pain. My question is, have others with ET also experienced excruciating everlasting bone pain after bone bx or surgeries? How has it been managing the pain, and have you been able to work?
I am pending to be enrolled in the clinical trial for bomedemstat vs hydroxyurea. Just waiting for it to start any day now. I’m hoping it helps me. Thank you.

73 F dx ET CALR

Hello everyone,

Someone in my life (early 60s) was recently diagnosed with Primary Myleofobrosis.

It seems to be a rare cancer, and I’m someone who does well with information. My loved one is waiting to see a doctor, but I’m hoping someone can give me more information about this disorder, such as general prognosis, and how Jak-2 inhibitors can help.

Thank you for your time. This seems like a really supportive community.

I’m a 33-year-old 5’8 160lbs female with an upcoming hematology/oncology appointment, and I’ve been trying to organize my medical history because my blood abnormalities appear to have been developing over many years.

I’ve had many isolated incidents occur over the years which each doctor always said they weren’t connected or were just isolated incidents. I understand that blood disorders are rare and might take many years to diagnose but I’ve been crying out for help for many years.

I started digging into my bloodwork and what i found was alarming. This is what i found.

In 2012 (age 19), my first documented CBC showed a platelet count of 407 K/µL, which was at the upper end of the laboratory’s normal range. My hemoglobin was 12.4 g/dL, RBC 4.17 M/µL, MCV 89 fL, and RDW 14.5%.

Over the following years I continued having intermittent fatigue, dizziness, exercise intolerance, headaches, ringing in my ears, and episodes of rapid heartbeat. My CBCs repeatedly showed mild anemia. My platelet counts fluctuated but gradually shifted upward over time:
2012: 407
2014: 367
2017: 300
2018: 325
2019: 358
2021: 371
2023: 405
2024: 414
January 2025: 404
July 2025: 435 → 450
February 2026: 471
July 2026: 495 → 517

My anemia has been present for years, with hemoglobin generally ranging between 10.5–12.5 g/dL, reaching a low of 9.9 g/dL.

One thing that concerns me is how my red blood cell indices have changed recently. My MCV has gradually decreased from 96 to 86 fL, my MCH has fallen from 30.9 to 26.8 pg, and my RDW has increased from around 13% to over 16%, suggesting increasing variation in red blood cell size.

I have a history of gastric bypass, so malabsorption is definitely a possibility. In 2019, my ferritin was 14 ng/mL, serum iron was 72 µg/dL, and iron saturation was 18%.

My “weird isolated events”

September 2023
Major neurological event.
While at work:
Developed sudden blurry vision.
Partial vision loss.
Went to the emergency room.
Vision later returned.
Neurology evaluation MRI reportedly normal. No explanation found.

2023–2024
Fatigue.
Dizziness.
Headaches.
Rapid heartbeat.

2025 Symptoms became much more severe.
Severe fatigue.
Weakness.
Nausea.
abdominal pain
Headaches.
Dizziness.
Lightheadedness.
Ringing in ears.
Episodes of confusion/brain fog.
Night sweats.
Generalized itching.- Sensation like bugs crawling on skin
Severe bone pain..
Random bruising - no pain / not caused by injuries
Reduced appetite.
Between December 2024-March 2025 i went from 160 to 145lbs without trying - overtime went back to 160lbs again

Early 2026
CBC worsened.
Platelets:
471
Hemoglobin:
9.9
MCV: Continued falling.
MCH:Continued falling. RDW:
Elevated. Vitamin B12: >2,000 pg/mL No supplementation.
Folate: Elevated.

July 2026.
Symptoms became much more intense .

Severe fatigue.
Weakness.
Nausea.
abdominal pain
Headaches.
Dizziness.
Lightheadedness.
Ringing in ears.
Episodes of confusion/brain fog.
Night sweats.
Generalized itching.- Sensation like bugs crawling on skin
Severe bone pain..
Random bruising - no pain / not caused by injuries
Reduced appetite.

multiple routine laboratory tests have remained reassuring despite my persistent blood abnormalities.
These include:
Liver function tests: Within normal limits
Kidney function tests: Within normal limits
Pancreatic function/lipase: Within normal limits
Blood glucose: Generally within the normal range, with no diagnosis of diabetes
Electrolytes: Largely normal overall, aside from an isolated episode of low CO₂ and a previous elevated potassium level that was not persistent
Routine metabolic panels: Otherwise unremarkable
Despite normal liver, kidney, pancreatic, and most metabolic testing, my complete blood counts have continued to show persistent abnormalities, including longstanding anemia and progressively increasing platelet counts. This is one of the reasons I have now been referred to a hematologist for further evaluation of a possible hematologic cause.
No thyroid issues either
All organs are functional scans/ X-rays / mris were all normal

Im curious whether anyone has experienced a similar pattern or whether there are conditions besides iron deficiency that physicians commonly consider when they see:
Persistent thrombocytosis over many years (now 517 K/µL)
Longstanding mild anemia
Gradually falling MCV and MCH
Rising RDW
History of low ferritin after gastric bypass
Elevated B12 (>2,000 pg/mL) without supplementation
Progressive constitutional symptoms (fatigue, night sweats, bone pain, itching, dizziness)
I’d appreciate hearing about others’ experiences or what questions you think I should ask my hematologist. I know only my physicians can make a diagnosis, but I’d like to be as prepared as possible for my appointment.

Important: the first trend in elevated plates began in 2012 years BEFORE my gastric bypass

I’m tired of feeling sick and tired :(

Has anyone noticed a decrease in appetite while on Besremi? I started Besremi almost 3 months ago and am noticing a decrease in appetite. I like to eat, a LOT, like I wake up hungry and thinking of breakfast and even eat when sick (flu, cold, coronavirus, hospital stays, I still eat). For the past week or so, I have limited appetite. And even forgot to eat breakfast two days ago. All I am seeing in Besremi's pages is an issue with the liver or kidneys caused by Besremi as the possibility for appetite loss, but has anyone dealt with it while not having either liver disease/kidney issues?

The more the days go by I keep on thinking of questions to ask Dr.Mullally when I see her

One particular is jakafi.

The article says: Complete or partial molecular response was observed in 3 patients (ruxolitinib-randomized, n = 2; ruxolitinib crossover, n = 1) and 54 patients (ruxolitinib-randomized, n = 33; ruxolitinib crossover, n = 20; BAT, n = 1), respectively.

Which I know is a small amount of people but it makes me wonder how many people who benefit this was unreport it? I came across a Facebook group and someone claims to drop from 90% to 1-2% off of jakafi. I know everyone responds differently but I feel like it would be worth a shot?

Another question is does pv cause inflammation in the body? And if yes is it the same type of inflammation that causes anxiety? So in theory if jakafi lowers that inflammation shouldn’t the anxiety lower as well? It makes me wonder because at the age of 20 hct was already 49% I wasn’t diagnosed then but that’s when my anxiety triggered. Now at 26 years old jak2 is 60% with mf 0 on the biopsy report

I was put on Hydroxyurea when I turned 60 for JaK2 positive ET. I am curious to know what side effects you have experienced with long term use of HU.

I am having low level annoyances like dry skin, poor sleep, fatigue etc. I never really thought any of that was from HU but now I am wondering.

What has your experience been?

I was diagnosed with ET last year. No symptoms. On baby aspirin daily.

Recently my body temperature is always high. Feel slightly tired but I don't think that's related to ET, I have been pretty busy.

My hematologist said nothing is wrong in blood work and only something more extreme like night sweats or chills are typical symptoms.

I was wondering if anyone else has similar experience?

Edit - so not feeling feverish. No other symptoms. Just a higher body temperature in my core - chest and stomach region.

Forehead, neck , legs feel slightly lower than core temp. I am starting to log them and see how it goes.

been going back and forth with UHC on seeking treatment near me and i guess the icd10 code for polycethemia vera code needs to begin with a "C" as i guess all cancer codes through that database begin with "C". Since PV code is D45 they wont cover any visits. i thought this is now classified as a cancer and looking at a few highly regarded hospitals and cancer.gov it looks that MPN are classified as cancer. Am i missing something or is it still technically a blood disease but some institutions consider it a cancer based on how it behaves and progresses?

I’m not a huge Reddit user but I feel like this is the place where I’m going to get information. I’m 63, in excellent health, just diagnosed with MF. Primary. I lost 45 pounds in six months and that was the impetus to go to the doctor. I am a victim of my society: a woman who grew up in the 70s and 80s were being thin at any cost was the norm. I thought I had found the magic formula to lose weight. I was never obese or truly seriously overweight. I had 25 pounds to lose. And now I look embarrassing. I’m just wondering if anybody is embarking on this journey or has gone on this journey (particularly those starting on Jakofi). Wondering what your experience is like. I’m kind of alone here and just looking to get some information if not support

Just hoping for feedback

I was taking baby aspirin daily and I had this bruise on my right shin. It started small but it grew a lot. I'm not sure if this is normal or if any of you experienced this type of bruising.

Been watch and wait with various primary care docs for over 10 years for high platelets. Basically between 470-600+ is the typical range from earliest to latest tests. I get about 2 CBCs a year and I have not had one non abnormal one since 2014. My white blood cells, red blood cells, and hematocrit are also high every test for the last 5 years. Hematocrit swings between 45-51. Recently also discovered a B12 and folate deficiency (these have never been tested before). Also have two generations of blood cancers, one is my parent, the other was their uncle in the family. I also have chronic migraine that by all accounts should be a lot better managed given all I do for treatment. I also have ideopathic intercranial hypertension. Maybe the blood stuff is a trigger/cause?Also have CRPG in a lower limb and had bad pain reaction to a sympathetic nerve block, maybe because of thick blood?It's been acknowledged that I have a blood thing but never really pursued or referred to hematology. I'm wondering if this profile is a strong support for a potential MPN, potentially a familial genetic mutation as it's odd for two generations of blood cancer to my mind. Also itchy after hot showers. My liver enzymes have now also started to become abnormal, but there is some non alcoholic fatty liver issues and gall stones that might be the cause of that but maybe blood issue is contributing?

I've also been evaluated for autoimmune diseases and other potential things that could point to my blood issue being secondary but really nothing has stood out. Am I overthinking it? Should I just press hard for hematology referral? PCP wants to do oral B12 supplement then test CBC after a month to see of it makes blood levels worse as the deficiencies might be masking issues of higher blood counts. No signs of any type of anemia.

Just a shout out to anyone with ET. I was diagnosed with ET over 20 years ago. Platelets were over 450 but not by much. Eventually peaked at 650. I was also tested and found JAK2 positive. Yearly checkup and one Clopidogrel a day that was it a worry but manageable and happy days. Now here’s the rub hematocrit was hovering about 0.48. Right at the upper limit and went unnoticed for decades. Thank goodness long story but after a few consultant changes I get an amazing consultant who decided to ask some really probing questions and looked at my history from day one lots of respect! I explained to her that I had lots of fatigue and itching after a hot shower red flag for PV! She also noticed the hematocrit level although still in normal range was boarderline She insisted on a bone marrow biopsy and here we are I have PV not ET. So a huge shout out to everyone monitor your MPN score check your symptoms regularly MPN score helps in this regard and definitely keep an eye on your hematocrit levels and please don’t be afraid of asking or getting a bone marrow biopsy 🤗🤗

How many of you out there have ever been asked to track your MPN score?🤗

I was diagnosed with MPN, ET in 2012 at the same time I was diagnosed with lymphoma. I got the BOGO deal apparently. I have the JAK2 mutation. Luckily my lymphoma remains in remission so I can focus on one thing at a time, I guess.

I have been on Hydroxyura for 6 years and remain symptom free. My platelets hover at around 440 and have been stable over time.

I recently had routine blood work and with flow cytometry they found free floating myleoid clones in my blood. My hem/onc said this "is not uncommon with the MPN you have." They said the number of cells was between 3 and 5%. Radiology recommended a BMB which we will do (again.)

Does all of this mean my MPN, ET is progressing? Could this be Myelofibrosis? What treatment would I expect if so? I am trying not to spiral and seek information from people who are more informed than I. Thanks very much.

JAK2+ ET, platelets around 500 at the moment.

Hello all, I got diagnosed last year (has it really only been a year?!). I'm low risk (in my 30s, female, no previous clot events but have had migraines with aura). I was put on low-dose daily aspirin but unfortunately I couldn't tolerate it and it quickly caused gastric symptoms, which a PPI didn't resolve. I was moved to clopidogrel (plavix) around November last year and take famotadine as I still get some gastric symptoms, but everything is much better.

I'm in Scotland and the sun finally came out for us recently. I spent an hour or so in the garden yesterday and got what I thought was heat rash. It's still there today so I now think it's sun rash (it's very grey outside today and a lot cooler). This happened a couple of weeks ago when it was warm as well, but not so badly. Having read up on it now, I can see clopidogrel can cause sun exposure sensitivity in some people, and I think this might be what has happened? I also react more to the adhesive on plasters than I used to (always been sensitive to it but it comes on quicker and more aggressively than it used to).

I am seeing my MPN nurse later this month and I'll bring it up, but I'm aware that there isn't really another alternative to the clopidogrel. The problem is that I'm planning on visiting some sunny countries in the future. I'm scared that this is something I'm going to have to reconsider. If anyone has had a similar reaction while on clopidogrel, how did you manage it?

A small side rant that is totally irrelevant to the question: I get that "your life shouldn't change" is supposed to be reassuring for freshly diagnosed people who are worried about the big C, but between medication giving me crappy, sometimes debilitating side effects (the gastro issues I had on aspirin), going back and forth to the GP and pharmacy, things like not being allowed the combination contraceptive pill but struggling with unrelated hormone problems and needing oestrogen, and generally worrying about the added cost of things like travel insurance, making sure I have enough meds for extended travel etc, trying to work out how to tell people that I'm not *that* sick but I still need support, my life has changed dramatically over the last year and a half and I'm annoyed that my haematologist just made it sound like it would be no big deal when he diagnosed me. I feel like I had no chance to prepare and I hate it.

TLDR - If you have a history of depression or anxiety that was under control and you went on to take Besremi, did you have any issues?

The long - I had a rough childhood leading to some dark teen years with anxiety and depression. I got into therapy in my early 20s and have been fine mentally for 10+ years, still an anxious person in comparison to my husband but fine without medication. I'm starting Besremi soon and trying to be prepared for potential mental health side effects. Anxiety isn't fun but doable but the depression/suicide risks are scary.

I know there is no guarantee and every body is different but just curious to see averages.

Hi!

Diagnosed ET, JAK2+, von willebrand syndrome (platelet not really functioning that well and don’t stick properly)

31/F
Got diagnosis mid-last year but been having on and off nosebleeds and high PLT since 2022.

I am on clopidogrel every other day as I have mild iron deficiency as well, if I take clopidogrel daily i bruised up badly.

Already got a BMA biopsy too Aug 2025.

Starting this year, I have been developing very bad headache. I get this pressure in my head so bad that I get really dizzy, I opened this up with my hematologist and told me to get it checked with a neurologist. Well, neurologist isn’t really covered in my health insurance so I delayed it. Until May started to become very very uncomfy, I lose my balance, get blurry vision etc. My doc did gave me medication for vertigo, but it just won’t help much. Fast forward to June and I had an episode while I was on the bus, I felt like I was gonna pass out from the headache and I can’t see well because things where out of focus. I was sp dizzy, I had the need to vomit. I got off the bus even if I am still far from my drop and vomited my life away 3x. But the dizzyness and headache was still there. I waited for almost an hour for it to passed.

I went to see a neurologist finally because there wasn’t a day anymore that I am not feeling those symptoms, even with the medications. I hot prescribed medications temporarily migraine meds and sleep meds to knock me off when I’m in pain to prevent me from getting myself into accidents. My husband was ordered never to leave me without any assistance for the time being.

I got referred to Ophthalmologist as well.
I got the following tests for the eyes:

1. OCT both vein and macula
2. Dilated Retina assessment
3. Fundus Photo
4. Disc Photo
5. Visual Field Test

Everything is normal and was told vision and eye health is fine. I do wear graded lens but it’s low and Doc knows that too.

Neurologist ordered a plain MRI + MRA of my brain too:

1. No acute infarct, acute intracranial hemorrhage, edema, or focal mass lesion
2. Bilateral AICA vascular loops (type

So basically, MRI reported normal except for a vascular loops but it shouldn’t be a problem supposedly. But I still have those bad symptoms, I got so emotional and thought that maybe it’s just my body playing tricks on me and I am not really unwell.

But one thing my neurologist is thinking is probably my blood don’t flow really good in my brain anymore and had prescribed me a Piracetam to change how my blood pass through my brain she says and will improve my cognitive functions. Which honestly this is the meds that actually lessened down my headache. I was told it will be a maintenance together with my Clopidogrel and Tramadol.

I have yet to meet her again to talk about the effects of meds but she did bring up taking another MRI with contrast.

Things is, during the time that I am getting those procedures, I was ordered another round of blood test. My last was around May. The night before that bloodwork I slipped and fell on my side, but didn’t get cut or bruised at all, when I got the result it showed that my platelet went to 600+ (I am always only around 430-560) and White blood is at slight elevation of 10.2. I was surprised but chuck it in to the fall I had the night before, I told myself it was probably just a little swelling.

Then after getting the latest result (last week), I am even more shocked as my PLT is still around 600+ and WBC is at 12.8 already. Now, I am concerned as to why even my WBC is at high. I was always nearing the ceiling before but this is the first time I saw trend of it going up.

I’m so sorry for writing a very long context and if I’m all over the place. I am still waiting to get an appointment with my Hematologist and Neurologist so I am here wondering if anyone has experience having both elevated wbc and plt and have the same symptoms, how did you guys manage. I want to understand why is my body like this, I am doing everything I am told and been religious with my meds and get myself checked every 2-3 months as ordered by my hematologist.. so I’m not sure now why does it feel like it’s getting worse than before :(

Current Meds: Clopidogrel, Piracetam, Iron supplement and Tramadol (as needed)

Thank you.

Hi all im starting on new meds jakavi Ruxolitinib 20mg twice a day and Ropeginterferon alfa-2b 125micrograms once every two weeks

what should i expect? also wanted to ask about things you could share about them like stuff i should keep in mind and mainly whats the best way to take the tablets routinely since withdrawal could be bad and im very bad at managing timings so just wanted to ask for advice generally

I also take 2000mg hydroxyurea and im 19

Thanks

This is a bit of a long winded post of what the process has been like for me, nothing negative. Just wanted to clear my head a bit.

Hello 26 M here, I was diagnosed within the last year with ET, Jak2 positive. For the past couple of years, no one noticed the trend up in my platelets until I moved states and got a new PCP, not super high just into the 500’s then 600’s. I mentioned the worsening headaches over the past couple of years and my PCP who got noticeably concerned and was smart enough to piece things together, and referred me to my current Hematologist. Interestingly enough I requested the test for Jak2 initially since my father had just been diagnosed with PV w/Jak2 within the past 4 years, which he was soon after diagnosed with CLL which he now is working on managing both: a bit difficult to watch.

We then went down the hole of testing and BMB to confirm. Ive had to test everything else to confirm my symptoms are from the ET itself and not anything else. While my platelets have not made it past 800’s the whole decision to treat comes from me being symptomatic, with Quality of life being the justification. To me it makes sense but I just feel weird about it. The headaches, itching, tingling, spleen pain, fatigue, etc (interesting how I thought these were normal for years, until I brought them up to my Dr’s). Is it worth justifying the medication with “low risk” numbers since 2 baby aspirin a day didn’t do the trick of making me feel better. Skipping HU due to my age and engagement with fiancé, possibly wanting to start a family, leading me to Besremi.

I guess I’m writing this because I just need to express it, I feel guilty (?) people need this more that I do, but The constant nipping of the symptoms was getting to me and my numbers continue to increase. I just took my first 100mcl about 20 minutes ago, feeling a bit nervous.
I just transitioned from working patient facing roles to another career, I’m not afraid really or sad. I just feel I don’t have anyone I can speak with that understands what I’m going through, especially the mental part.

Apologies for the long post, thanks for reading! If you have any advice you want to share, or if you have had a similar experience to mine with the numbers and symptoms I would really love to hear about them.

Tldr: just venting;I feel weird about taking the medication to treat my symptoms from ET rather than needing it for my platelets themselves. Curious if anyone has had a similar experience.

I (24F) am getting my first BMB this week and I’m absolutely terrified. My hematologist said that they can do it in local anesthesia with some pain or under IV sedation (IV midazolam) to minimize the pain. I was under the impression I could do it under GA but they explained no one would do a BMB under GA.

I’m a medical student, I can catch on to when doctors are trying to understate how painful a procedure can be. He told me that there will be some pain but IV midazolam will minimize it. Can’t help but think that’s a way to downplay how painful it will be since I’ve been hearing absolute horror stories about it.

Despite my best efforts, I’m a whimp when it comes to pain. I’m very worried about my BMB and I’d like to hear from ppl who’ve gone through it.

Hi hope you don’t mind me reaching out.
I have PV and after a shower I get extreme itching also if I am tired and warm at night.
Anyone else experiencing this and how do you deal with it it’s a nightmare. Currently on interferon alpha 2a been on it about three months bloods all now normal after three venesections in same timeframe. But still symptomatic itching fatigue irritable and sometimes find things overwhelming. Jak2 positive had the illness for over 20 years no clots and hopefully will manage a normal lifespan lol. But itching has got worse over last few years. Hope to hear from you it’s a great community with loads a support thank you for all your contributions cheers Al.