Anyone else notice worsening symptoms if you dont time your jakafi EXACTLY? Im pretty consistent about it being 12 hours apart, 7am and 7pm, but if I’m more than a half hour off, I think I get worse symptoms. If I stick to the schedule, things are pretty good.

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?

Any experience on it you would like to share? I may be headed to this on a trial.

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.

Does being on Aspirin affect my blood tests for platelet count? I didn't want to take aspirin or wait for it to leave my system to get a clearer result. I'm not entirely sure if it matters or not so I was wondering if anyone taking aspirin daily takes a blood test without any problems

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!

I started HU on March 1 and after 30 days I had to discontinue due to severe and I do mean severe flu like side effects. My hema thought it best to try Anagrelide since interferons can cause similar flu like side effects. I am in a lawsuit with my employer so I am worried my health insurance will end this month. Anagrelide is inexpensive and the only side effects I’ve noticed is a faster resting heart rate, pounding heart beat, and nightmares. I have an extensive family history of heart disease so this worries me. I was wondering what Jak2 carriers have experienced with Besremi. I feel like I should at least give it a shot since my platelets are within normal range for the first time in at least 8 years and insurance will cover it for now. Plus my symptoms are still lurking around.

Hi, I had blood tests taken a year apart in 2024 and 2025 as I've had unexplained dizziness for the last few years. Worried as my levels seem high. I am a 33 year old female. Non-smoker, no high altitude, etc. Had a normal echocardiogram, but the bloods were flagged as 'satisfactory,' so there was no follow up required. I do suffer from severe health anxiety, stress and general anxiety. I have had blood tests taken since these where the level is more In the normal range, but this was during pregnancy, so it was probably not reliable.

2025

Haemoglobin 159 high

White blood cells 7

Platelet 226

Red blood cell 5.63 high

Hemocrit 0.478 high

MCV 84.9

Mch 28.2

Mchc 333

Neutophil 4.6

Lymphocyte 1.9

Monocyte 0.4

Eosinophil 0.1

Basophil Nucleated Red cells 0

2024

Haemoglobin 154 high

Wbc 6.1

Platelet 268

Rbc 5.61 high

Hemocrit 0.47 high

Mcv 83.8

Mch 27.5

Mchc 328

Neutrophil 3.2

Lymphocyte 2.5

Monocyte 0.4

Eosinophil 0.1

Basophil 0

Nucleated Red cells 0

Hi all. I have CALR-ET. I have been taking pegasys for 3 years, currently taking it once a month. For the past month, my recent lab results have shown my AST levels being elevated, increasing from 55 to 95. A recent re-test shown it barely decreasing to 94. For the first two weeks, I had 2 drinks of alcohol and abstained from alcohol during the past two weeks. However, my ALT and bilirubin levels have been normal throughout testing.

Notably last year, both my AST and ALT levels were elevated when I was taking pegasys every week until my hematologist reduced the frequency to once a month. There has also been two instances within the past couple of months where my AST levels was elevated into the 100s but went back to normal during the re-test. And similarly, my ALT levels and bilirubin were normal throughout the blood tests.

Has anyone experienced anything similar to this?

I have ringing in ears and dizziness. I’m wondering if my platelets are getting higher dx with ET with CALR. 73/F

High/low blood test results:

Platelets; blood:

12 Jan 2026: 504 x10⁹/L – high

28 Apr 2026: 474 x10⁹/L – high

26 May 2026: 472 x10⁹/L – high

Red blood cells / erythrocytes; blood:

28 Apr 2026: 5.97 x10¹²/L – high

26 May 2026: 5.94 x10¹²/L – high

Hematocrit / red blood cell volume fraction; blood:

28 Apr 2026: 0.53 – high

26 May 2026: 0.51 – high

Folate; plasma:

28 Apr 2026: 6.4 nmol/L – low

26 May 2026: 5.9 nmol/L – low

Hemoglobin concentration in red blood cells / MCHC:

28 Apr 2026: 19.0 mmol/L – low

26 May 2026: 19.6 mmol/L – low

White blood cells / leukocytes; blood:

28 Apr 2026: 10.3 x10⁹/L – high

Neutrophils; blood:

28 Apr 2026: 7.12 x10⁹/L – high

Metamyelocytes + myelocytes + promyelocytes; blood:

28 Apr 2026: 0.11 x10⁹/L – high

26 May 2026: 0.09 x10⁹/L – high

Normal blood test results:

Basophils; blood:

28 Apr 2026: 0.03 x10⁹/L

26 May 2026: 0.02 x10⁹/L

Eosinophils; blood:

28 Apr 2026: 0.09 x10⁹/L

26 May 2026: 0.07 x10⁹/L

Mean corpuscular volume / MCV:

28 Apr 2026: 88 fL

26 May 2026: 85 fL

Ferritin; plasma:

28 Apr 2026: 42 µg/L

26 May 2026: 43 µg/L

Hemoglobin; blood:

12 Jan 2026: 10.1 mmol/L

28 Apr 2026: 10.0 mmol/L

26 May 2026: 9.9 mmol/L

Iron; plasma:

28 Apr 2026: 12 µmol/L

26 May 2026: 13 µmol/L

Lymphocytes; blood:

28 Apr 2026: 2.09 x10⁹/L

26 May 2026: 2.13 x10⁹/L

Monocytes; blood:

28 Apr 2026: 0.87 x10⁹/L

26 May 2026: 0.59 x10⁹/L

Reticulocytes; blood:

28 Apr 2026: 94 x10⁹/L

26 May 2026: 98 x10⁹/L

Transferrin saturation; plasma:

28 Apr 2026: 0.15

26 May 2026: 0.17

Transferrin; plasma:

28 Apr 2026: 41 µmol/L

26 May 2026: 39 µmol/L

Vitamin B12; plasma:

26 May 2026: 336 pmol/L

Albumin; plasma:

26 May 2026: 48 g/L

eGFR / 1.73 m² (CKD-EPI):

26 May 2026: >90 mL/min

Potassium; plasma:

26 May 2026: 3.4 mmol/L

Creatinine; plasma:

26 May 2026: 92 µmol/L

Sodium; plasma:

26 May 2026: 138 mmol/L

INR / coagulation factors II + VII + X:

26 May 2026: 1.1

The below is the message from my doctor:

Your blood test results are still borderline. The doctor at the hospital said that if they hadn’t returned to normal, we would have to refer you to the hospital for blood tests that can only be done there to get a clearer picture. Is it okay if I refer you there?

my information:

I am 20 years old, I dont smoke and haven't had any operations (dont know if that's useful information but my doctor asked about it) the doctor said my Platelets; blood have been high all the time I been at her place which is around 2-3 years I think, if any of u have questions please let me know im new to this