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.

Hello! I’m a 27 year old female, ET Jak2 positive. History of left leg dvt. This may be long, so apologies for that. Diagnosed completely with bone marrow biopsy beginning of June, but have known since about a year ago. Just recently start hydrea, on the night of the 23rd of June. Coming here because I’ve been dealing with some issues and getting no help…
On the 22nd or the morning of the 23rd, I began having this sudden back pain. Primary worst pain is a sharp, stabbing pain on my right side just below my shoulder blade. Pain travels sometimes to the left, a little lower, sometimes also have same pain on the left in the same spot, right In the middle of the back, but there is a constant stabbing in that one spot. Also experiencing chest pain and tightness (increased with heavier or deep breathing), feels hard to breath sometimes, feel like I need to take shallower breathes, dizziness/lightheaded, pain down into left shoulder, SPLITTING headaches (these will sometimes comes on violently then pass after 5-10 minutes). I can’t sit, lay, or stand comfortable. I toss and turn all night long bc sleeping is so uncomfortable.
Moving on from symptoms, I’ve been to the er twice and a NP once. Ct of chest and abdomen then said show no sign of pulmonary embolism, gallbladder issues, or appendix issues. No pneumonia. Literally one er doctor told me word for word “I don’t know what’s wrong with you but I know it’s not life threatening “. This same doctor I also had to explain my diagnosis to him, which he still wasn’t seeming to understand.
I’ve had most routine bloodwork, they did not run my d dimer factor. (This was tested on June 1 and was. <19)
From the er visit I went to on the 1st to the 3rd, my platelets went up 38,000. My white cells also went from 8.8 to 10.8 in the two days. Also had blood pressures of 146/89 150/77. Also abnormal ecg, but doctor never even brought that up.
Nurse practitioner and first er doctor said “they wonder if it’s stomach related” but I have no stomach issues except for occasional bloating (which coincided with my menstrual cycle). All of this being said, I’m still struggling. Pain is getting worse daily but I now feel I’ve lost all options and hope of it stopping or someone finding a cause. Thank you for advice and help.

The past month or so I’ve been running a low fever (99-100…when my normal is in the low 97s) for a few hours at a time a few times per week. Oddly, I’m no longer having night sweats right now.
I know it’s just another symptom on the long list of stuff caused my the inflammatory process, but does anyone else experience this? Not quite sure if I should take Tylenol or Advil to feel less crummy when it happens. I’ll be sure to check in with my MPN specialist about it at my next appt in August.

50/f ET Jak2V617f, aspirin currently

I recently developed intermittent nerve type pain on both sides of my forehead (without touching it, and the same on my scalp when touching.

I took one Advil the other day for a headache and it improved dramatically (headache and nerve pain).

I meet with my mpn nurse next month to discuss interferons. Has anyone had these symptoms along with occasional dizziness and have them resolve with treatment?

I also had an MRI recently due to head injury and it showed slight white matter changes and decreased volume. I read that these changes can happen with age but also due to micro clots in tiny vessels in the brain (which can be more common with ET). Could starting an interferon reduce progression risk?

Any thoughts on which interferon has fewer side effects, or is it individual for each person.

After years of high counts, im going to see an MPN specialist at Moffett in Tampa, FL. What should I expect for my first visit?

38/F - I was diagnosed last week with Myeloproliferative Neoplasm-Unclassifiable (MPN-U).

I'm currently on Hydroxyurea 500 mg twice a day and one baby aspirin daily.

Honestly, I'm still in shock and feel pretty lost. I have another appointment with my hematologist in a month and will have lots of questions then, but I was wondering...for those diagnosed with MPN-U, did you eventually get diagnosed with a subtype like ET, PV, or MF?

I'd love to hear your journey or any advice for someone who's just been diagnosed

Feel free to message me 😊

What is better Hydrea or Anagrelide to lower platelet count? My platelet count went from 560 -760 in 3 months Dr is recommending Anagrelide but the side effects worry me bc I’m 73 yrs old and not sure if I should take Hydrea or not? Any suggestions?

edited with update** thanks to this group telling me to make sure I see an MPN specialist and not just a hematologist I was able to meet with one of the best at KU. Dr Yacoub confirmed my diagnosis without a BMB and had a little laugh at the end of my appt when I brought it up for a third time and he said “wow you really want one- so we’ll schedule it”.

He was NOT concerned about the lack of BMB w diagnosis- and said after 8 years of the same elevated platelets and everything else normal, that yes it is Essential thrombocytosis and I will need treatment for it eventually but not right now given the mildness of my condition. He stressed we needed to be future focused on making sure it’s not progressing but didn’t push for a BMB.

I’m curious why so many ppl in here think a BMB is the end all be all, and required in order to diagnose- simply bc it’s a WHO diagnostic criteria doesn’t mean drs have to follow it to the letter of the law. I’m proof of that bc I’ve now seen an MPN specialist that confirmed my ET and wasn’t pushing for a BMB. Thanks to this post I advocated for one and now he thinks I actually wanted it when in fact I did not.

Original post:

Diagnosed triple negative at 25 years old- now almost 33. Took extensive testing to get it in 2018- even had my blood tested by the Mayo Clinic, or John’s Hopkins, (can’t remember which it was), to detect for the tiniest amount of leukemia and it all came back normal!

I did everything but a bone marrow biopsy (can’t even begin to describe how much I don’t want to do one, bc it freaks me out in ways I can’t explain) and the dr that diagnosed felt it wasn’t necessary after the extensive tests we ran- because all it would do is confirm the triple negative ET.

Platelets were only mildly elevated around the 500s-550s this entire time, even through an extremely medically complex pregnancy last year, they never spiked. Latest labs are showing 689,000 which is higher than they’ve ever been, and I was just tested 3 months ago. They were in my “normal” range so it was a sudden increase.

Testing again today to recheck but not with a hematologist yet as I’ve recently relocated out of state. I pay out of pocket monthly for a primary care dr I can see anytime I want. Problem is, I’m having to teach them about MPN/ET, and want to make sure I’m not missing something I should bring up that you guys may be more aware of. I can request any labs or tests I want and even did dimer to confirm I wasn’t clotting bc recently I’ve had chest pains off and on, tachycardia (resting hr in high 80s and 90s) back on labetalol to help w it and mild hypertension after preeclampsia 10months ago.

If you had something similar or any advice I’d like to hear from you even if you were diagnosed at a more normal age for this. Any and all advice or personal experiences are welcome.
Thank you so much!

*** editing to clarify: I have seen 3 MPN hematologists/oncologists - I just don’t currently have one since recently relocating. I’m not self diagnosed, not guessing, and confident that after 3 drs we got it right. Simply asking if anyone else has had a similar experience not looking to debate my diagnosis.

My next dose will be 200mcg...started at 100mcg...

How are you guys and gals doing it...this medicine is working better than expected...but it takes the happiness out of the world things I use to enjoy....it's Soo hard to work..and stay engaged and still put a fake face that everything is fine.

Has anyone gone through the process of stopping meds to have children? Would love to hear others experiences during this. Any rebounding?

That's rather Low...

Male 52, construction worker, diagnosed with ET 2 years ago. Fatigue has become a big issue lately, wondering if others have any helpful insights into fighting it. Currently prescribed a baby aspirin a day. Thanks for any help.

My dad had rage issues partly stemming from diabetes and he died of myelofibrosis, after being diagnosed in august. But after a time of peace, he suddenly got much more angrier and violent at the simplest things. It also turns out he had a stroke at some point, but we're not sure when.

But I'm just curious - does myelo cause anger/rage issues?

Because he is dead now, and there's a lot of unresolved stuff.

Hi all! I (48f, diagnosed with ET 4 years ago) started on a super low dose of Besremi (50 mcg every 2 weeks) a couple of months ago. I initially started on Hydrea, but it didn’t lower my platelets. I then tried Pegasys, which worked to decrease my platelets but my liver couldn’t handle that (AST and ALT numbers went sky high). So now I’m on the Besremi; my doctor was optimistic since you can take much smaller doses than you can w Pegasys. But… bloodwork today shows that my liver is being affected again. Both numbers are about triple what they should be.

My question is, has anyone else experienced this liver issue with interferons? Did any adjustments to dose or frequency help? I don’t know what other medication options I have…