r/MPN

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.

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.

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.

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?

40F, no medications, 7 months postpartum.
Vaginal delivery.
Prolonged postpartum bleeding.
Two D&Cs for retained products/postpartum complications.
Hospitalized for postpartum uterine infection and received IV antibiotics.
Continued bleeding after the D&Cs.
My menstrual periods have been heavier than before pregnancy.
Recent labs:
Ferritin: 12 (iron infusion scheduled in about 1.5 weeks)
Hemoglobin: 15.0
Hematocrit: 44.5**%** (lab upper limit 44.4%)
RBC: 5.03 (upper end of normal)
MCV: 89
WBC: 4.97
Platelets: 317
CBC trend:
Dec 2025 (shortly after postpartum bleeding): Hgb 12.2, Hct 36.2, RBC 4.09
Feb 2026: Hgb 14.0, Hct 42.8, RBC 5.02
Mar 2026: Hgb 13.8, Hct 42.1, RBC 4.98
Jun 2026: Hgb 15.0, Hct 44.5, RBC 5.03
Symptoms:
Fatigue
Restless legs
Easy bruising
Itching (not always related to showers)

Should the upward trend in my hemoglobin, hematocrit, and RBC despite low ferritin raise concern for a myeloproliferative disorder such as polycythemia vera, or does this look more like normal postpartum recovery plus iron deficiency? Would you recommend any additional evaluation (such as repeating the CBC later, erythropoietin level, or JAK2 testing), or would you simply monitor these values?

36 F 125 pounds. I got my first bone marrow biopsy this morning and when I arrived my heart rate was so high from nerves they gave me Xanax. After my heart rate calmed they were also going to give me twilight sedation with fentanyl and versed. I felt relaxed from the Xanax but there was not any point where I felt more relaxation from the IV sedation at all. I kind of thought I was going to be totally knocked out. I was fully alert and could hear everything going on. Even with local numbing, I also still felt the pain of the biopsy. I’m not sure if I just wasn’t given enough sedation or if I am somehow more intolerant to it, but I’m just curious if anyone else’s situation was similar. Thank you!

Hey MPN brothers and sisters. 58F Jak2ET. So after almost a year since dx I finally got to see an MPN specialist today. I requested a referral months ago but my hematologist asked me to give him 6 months. The hematologist prior to him told me to my face that she did not believe me when I described my symptoms. The specialist first scared the hell out of me when he explained how high risk I was for a stoke or heart attack and that the arterial clot I suffered in 2023 was a huge warning sign. He then pointed out that an interferon should have been my first line of treatment, not the HU and anagrelide that I could not tolerate. I will be starting Pegasys asap. He then outlined his intention to do everything he could to alleviate my symptoms not just lower my platelets, which have been climbing quickly since stopping anagrelide. There was a lot more conversation but bottom line is that if at all possible, insist on seeing an MPN specialist. This is the first time I have had hope and had my eyes opened all at the same time. And drink lots of water and do your cardio! Happy Fourth of July❤️

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?

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.

I’m a soon to be 19 year old woman with suspected essential thrombocythemia & my platelets have recently been dropping down from 528 to 425 (over multiple months) but I’ve noticed that my hemoglobin has started dropping at the same time going from 132 to 122. I don’t know what’s going on, I’m not iron deficient. What could cause this? Grateful for any advice.

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.

That's rather Low...

Hi everyone,

I'm a 26-year-old female and my gastro recently referred me to a hematologist because of persistent elevated platelets and new easy bruising after bloodwork that lasts a very long time . It is also extremely difficult to get my blood during bloodwork. Not sure if that means anything.

Some of my labs/symptoms:

Platelets have been consistently in the 485–550 range (never over 700). Been about a year or two for this range.

Iron has been around 32.2–32.5.

Hemoglobin is normal.

Significant weakness.

Extreme, unintentional weight loss.

I bruise very easily now, especially after blood draws, and the bruises last for a long time.

I also recently had a positive fecal occult blood test (no visible blood), and I've been dealing with abdominal pain and changes in my bowel habits.

I'm trying not to jump to conclusions, but I'm naturally anxious and wondering if anyone has experienced something similar.
I know no one can diagnose me over Reddit, but I'd appreciate hearing about others' experiences while I wait for my hematologist appointment that my gastro recommended . Thank you.

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.

Next week I’ll be getting a ct scan guided bone marrow biopsy done at interventional radiology with twilight sedation. To be honest I’m extremely nervous! Just wondering what to expect as far as the twilight sedation? Are you totally knocked out or semi conscious? Do you feel any pain? I appreciate any input!

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.

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…