r/MPN

I’d like to share my experience with my diagnosis and treatment for ET with a CALR Type 2 mutation, in case it might help someone else.

I remember that when I was diagnosed, I went through several very dark months where the information I found online about the disease was very confusing, and unfortunately most of the patient experiences I read on posts were not really positive.

Three years ago (31M), a routine blood test detected that my platelets were extremely elevated (1.6 million), and after two or three months of tests (including a bone marrow biopsy), I was diagnosed with ET positive for a CALR Type 2 mutation.

Since I was young, active, and asymptomatic, my hematologist suggested not starting treatment immediately and instead following a “watch and wait” approach. We stayed in that phase for about 8–9 months until my platelets peaked at 2.5 million, and then we decided to begin treatment.

The treatment consisted of taking hydroxyurea for one month to quickly lower my platelets (during that month they dropped from 2.5 million to around 600k), and from that point on I started long-term treatment with interferon alfa-2a, which has kept my platelets stable at around 370k ever since.

I know I’m only taking the first steps on this long MPN journey, but during these three years I’ve been able to live a completely normal life, reducing some bad habits (junk food, alcohol) or completely eliminating them (smoking). If it weren’t for the hospital visits every three months and the weekly medication, I wouldn’t even know I had this disease.

As for the medication, the only symptoms I would highlight are that sometimes I get a mild (and occasionally strong) feeling that I’m about to get sick. This happens maybe once every month or twice at most, but it goes away as quickly as it comes, and I don’t feel it affects my life too much. I’ve also had mild but constant hair loss. But considering that I’m a 35-year-old man and my father isn’t exactly blessed with a full head of hair either, I’m not entirely sure I should blame the interferon for that.

And my recommendations, if you’re just starting this process: first and most importantly, put yourself in the hands of an MPN specialist hematologist you trust and let them guide you through the process. They’ve studied the disease, they’ve probably had similar experiences with other patients, and they know your specific case. They’ll guide you much better than any internet post or article ever could.

And second, the obvious: improve your lifestyle habits. Eat better, quit smoking, reduce alcohol… In my case, after the diagnosis I stopped doing sport because I was afraid something might happen with my platelets being so high, and I went from a very active lifestyle to barely doing any exercise for a couple of years. I think that was the biggest mistake I made during this time. About 7–8 months ago I started doing sport again, and it has improved all the little things that had been bothering me during this period (especially mental health/anxiety and the flu-like side effects that interferon sometimes causes). Obviously, you should adapt the intensity of the exercise to your circumstances and discuss it briefly with your hematologist, if you weren’t doing Ironmans before, now probably isn’t the time to start.

I know the disease progresses differently for every patient, and I consider myself very fortunate that, given the circumstances, everything has remained so stable. I just wanted to share a positive experience for people who may have just been diagnosed and are falling into the same spiral of negativity that I fell into when I started this.

Hi! Im writing this to know how do you deal with the constant fatigue? Im 20 years old, female, have thalassemia and my hematologist suspects i have ET as well since over the last 3 years my platets have been rising (i have more than 700k) and my iron levels are not low. I'm waiting for my JAK2 results.
Im used to feeling tired because of the thalassemia, but i feel like im more tired each day that passes. I run out of energy at 5/6pm and its honestly so frustrating bc i want to be able to do things. The minute i come home from work its like i collapse in the couch or wherever. I cant go to the gym or run in the afternoon bc im already out of energy. I cant go out on weekends unless i napped previously. Some days i feel pretty good but most days i just feel tired all of the time.

Of course, im going to discuss it with my hematologist but im asking here mainly because of the weight it holds mentally speaking. I feel frustrated and completely powerless. Im tired of being tired and i dont know what to do. I have an excellent diet and a good (generous) sleep schedule.

I would like to know how do you deal with the constant fatigue? bc even if i dont have et i do have the thalassemia fatigue and im honestly so sick of it. I feel limited at all times.

My husband (34) was diagnosed with ET with a CALR exon 9 gene mutation a couple of years ago after a routine blood test showed elevated platelets. (He had the bone marrow biopsy and everything)

He's a bit of a hypochondriac and was always worried that he had some kind of condition, so he hadn't gone to the doctor for well over a decade for fear of what they might find (even though he appeared completely healthy). So, you can imagine that when he finally went, how devastating this diagnoses was to him.

When he was first diagnosed, his platelet counts were in the 600-700 range I believe, so he was put in the "low risk" category. They have fluctuated but not changed significantly until his most recent blood test this past week showed that they were at 933. We're both a little freaked out, and he's going to start having blood tests done every 12 weeks to monitor before they consider treatment. So, I guess we're still in the "watch and wait" stage. He takes a baby aspirin every day.

In terms of symptoms, I guess maybe fatigue and not feeling hungry. The fatigue isn't serious, and I don't even know if it's a symptom of ET or because of our lifestyle (both of us have desk jobs and we aren't super active, and we could stand to have a better diet), but he's been falling asleep on the couch every night and every morning he says he could use more sleep, even if he's slept 8 or more hours.

He has also complained about not ever feeling hungry. I've read that this can be because of an enlarged spleen, but I don't think he's had any other symptoms of that? Not sure if that's a common symptom that anyone else experiences. He doesn't get full fast, and almost always is able to finish my plate for me on top of his, which I know that getting full fast is also a symptom.

After this most recent blood test, he has decided to quit nicotine (zyns) and is abstaining from alcohol for now. We are going to start going for more walks, and I want us both to get serious about eating better. (We indulge in the occasional fast food and pizza, but that's about as bad as it gets honestly. Otherwise we eat pretty good when we do cook at home.)

I've seen several people mention finding an MPN specialist, which there are only 2 in Michigan that I can find, but I will have him talk to his doctor about getting a referral to one of them (unless you don't need a referral, I dunno, I'm new to all of this!!)

I guess I'm coming here to ask how I can best support him, and how can I reassure him (and I) that everything will be okay? He's incredibly stressed and worried about having a stroke, or a blood clot, or developing Leukemia. How do we keep from spiraling and thinking every change to his body or how he feels is a symptom? Is there anything else we can be doing to help either decrease his counts, or prevent them from going up? Anything more we can do to help prevent blood clots/stroke/heart attack? (aside from the obvious exercise and better diet.)

Any encouraging words to help us not despair would be greatly appreciated. We've been trying to start a family, so the fact that it's progressing so fast is making me feel like maybe we shouldn't have kids. I don't want this diagnoses to put our life on hold, but I also want to be realistic.

Thank you :')

Sincerely,

a concerned wife

I have been diagnosed last November at the age of 36. After 8 phlebotomies in 5 months, I'm still trying to catch up with my bone marrow to reach the golden standard on my red blood count.

I did the math: my iron is almost depleted, and yet, a single phlebotomy session is overrun by my production in only about 45 to 60 days.

My fatigue is unbearable. I can't concentrate on my job. I can't go to the park with my 3 years old daughter. I can barely climb a couple sets of stairs without getting tired.

Visited 5 different doctors so far. They all said "phlebotomies only" in my case. Except for one who right away prescribed me hydroxyurea (which I'm not taking because it would be a mini chemo for decades).

My platelets are around 550k and I'm still at 53.6% hematocrit.

I live in Brazil and have even consulted with the best doctor in the field here. But no one will prescribe Besremi. I heard that is because health insurance companies bully them into not doing so.

So I'm asking you guys: do you know a doctor who will talk to me over a Webcam (I speak English, Portuguese and can get around with Spanish)? I can pay anywhere in the world. All I need is a prescription and a report explaining why other methods are not ideal (phlebotomies losing the race against the marrow and hydroxyurea not being recommended for young pacients). Once I have those 2 documents, I can go to the court and make the state sponsor the medication for me.

Just been advised via a letter to my gp that I have “very low jak2 (under5%).”

That’s the quote from my haematologist to my gp above . I hope this is a good thing. I don’t currently have any symptoms . picked up as my platelets were 469 so they tested me. Platelets in Jan were 453.

Grateful for any responses it’s all a new learning curve these past four weeks.

I hope you are all ok. God bless

Hello. I’ve been diagnosed with ET JAK2 since 2019. My question is, for those of us who are perimenopausal or menopausal, is it possible to receive HRT treatment? I’m having severe symptoms for a 39 year old and have talked to a provider about an estrogen patch. She said I wasn’t a good candidate because of how estrogen increases clotting risk. How have some of you gone about treating peri/menopause?

Hi, I wrote here before, before I had many results.

I'm a woman, 38 year old.

I'm 2021-2022, my platelets were between 691 and 786. I wasn't sent to a hematologist because they thought it was reactive.

All results are from three dates in April:

Platelets (1451, 1305, 1177); Hemoglobin (144, 142, 129); Hematocrit (0.438, 0.423, 0.381); Ferritin (149, 186); LDH (437, 412). The rest of my CBC is all normal.

Few Ovalocytes and Rare Schistocytes.

I got this preliminary results from my bone marrow biopsy (it has been sent for an expert consult):"Right posterior superior iliac spine (bone marrow biopsy): Hypercellular, immature bone marrow with abundant megakaryocytes with dysplasia. Specimen consists of a hypercellular bone marrow as well as several blood clots. The bone marrow appears immature and there is abundant megakaryocytes of various forms including dysplastic megakaryocytes."

And I just got my gene mutation results back with CALR L367fs (Type 1) mutation at 50% VAF.

They also found a 5 cm lesion on my (non cirrhotic, healthy) liver, but my spleen is normal size.

This feels like pre-MF? Maybe progressing? What does the 50% VAF means in this case?

I'm spiralling a little bit, so thanks for all info you could give me before I get the final results and my follow up with my hematologist (I'm also waiting on the MRI for my liver).

I am 58F with Jak+ET. I started Hydroxyurea 30 days ago and noticed neck, shoulder, and back pain and stiffness after a week or so. I figured it was just normal for me so I kicked up the workouts. 5 days ago I got a splitting headache that won’t stop and my pain increased greatly. Now I have even worse fatigue, low grade fevers, and constant chills, and threw in some nausea. I have lived with chronic pain for years so when I say this is the worst I have ever felt, it’s bad. Anyone else have these type of reactions?

59M here, very active (cycling 150–200 miles/week + strength training 1–2x/week). I’ve been diagnosed with a JAK2-related condition and my doctor plans to start me on hydroxyurea at age 60.

I’m trying to understand real world experiences from others on this medication.

For those taking hydroxyurea:

• How did it affect your energy and endurance (especially for endurance sports)?
• Did you notice any changes in recovery, strength, or ability to push hard efforts?
• Any day-to-day side effects that impacted your active lifestyle?

Also:

• Did it affect your sex life at all (libido, erections, overall function)?
• If yes, was it temporary, dose-related, or persistent?

Any insights, patterns, or things you wish you knew before starting would be really helpful.

Appreciate any firsthand experiences—thanks.

Hi guys, I am 28F recently diagnosed with CALR (not type 1 or 2) after finding my platelets were 1,500,000 after an unrelated ER visit. Every single thing in my blood panel is normal except for my very high platelets . My hematologist wants to start me on Hydrea right now but I have yet to take it. I am a very “holistic” I guess you could say person medicine wise. I’m a healthy person otherwise and this whole thing has been a shock. Anywho, I was wondering if anyone has had any experience with taking supplements as opposed to hydrea or other prescriptions? I am aware that this is a chemo pill and I do NOT want to take it. I’m very reluctant and would love to know if there are any other mpn ~natural route~ peeps in this group. Please don’t come for me if not as I am not bashing anyone who does take these prescriptions, I just have a personal preference and that is all. Any input of anyone’s experience in general helps rn as I am in a very confused state still!

Hi everyone — I'm 39, diagnosed with PV about a year and a half ago, JAK2+, high allele burden (72.4% as of early 2025). I've been on Besremi since March 2025, currently at 450mcg and approaching the 500mcg max.

My CBC response has been really strong — WBC and platelets have normalized dramatically, HCT responding but still a work in progress — but I've been dealing with moderate to significant hair loss since early in treatment. I did seem to be recovering somewhat over the summer when my dose was stable at 150mcg for a few months, but as escalation has continued the loss has picked back up. To be honest this has been difficult for me emotionally, and I'm trying to set realistic expectations since I'm planning to stay on Besremi long-term.

A couple of specific questions for anyone who's been through this:

1. Has anyone experienced hair regrowth *while still on* Besremi or another ropeginterferon, rather than after stopping? Especially at higher doses?

2. Did things stabilize or improve once you hit your maintenance dose and stopped escalating?

I've done a lot of research and can't find much data on this specific question — the trials don't really track hair as an endpoint. So I'm really looking for real patient experiences. Any input appreciated, even if your answer is "no, it stayed thin the whole time." I'd rather know than wonder. Thanks!💙

Hello all,
My father (66) was diagnosed with PV approx 6 years ago, he was on hydroxyurea and started off having his blood taken out. He suffered a NSTEMI last July and had a double bypass which resulted in gastric ulcer complications and needed 4x blood transfusions.
Fast forward recently cardiologist noted murmur queasy leaky valve and heart failure. Hematologist noted recent blood test showed 3% myelocytes and 7% metamyelocytes in wbc. He was also severely anemic and had a blood transfusion last two days ago. His current symptoms are shortness of breath on exertion, intermittent chest pain, abdominal pain, lethargy, overall unwell feeling, slight pitting oedema in bilateral legs. Last night I noted he had a fever 38.1C and took him to the hospital. They admitted him and his hematologist came in and we’re doing another bone marrow biopsy as he suspects his PV has turned into MF and the leaky valve and heart failure etc may be secondary to the MF. He said he will try him on Jakalvi again even though dad said it made him feel a bit unwell but it might have been the heart issues not the medication. Otherwise the only other option is bone marrow transplant and the prognosis with dad’s age and heart isn’t favourable.
I’m just writing here for any support if anyone has gone through this with having heart issues as well and share experiences and advice.

I have recently been diagnosed with PV but they want to do further testing as I also have signs of von willebrand disease type 2m. Just had my bone marrow biopsy. it was CT guided, was moderately sedated and it was a breeze. I checked in at 0630, went to the lab for two vials drawn at 0720. after that I went to radiology where they brought me into a recovery room. the nurse came in and started a saline lock as well as took my vitals. my labs hit around 0745, when the wheeled me into the room with the CT machine. I rolled over onto my stomach and they put an O2 line on my nose. as I was facing forward I spoke to the nurse who was already pushing fent and another “relaxing” medicine. at every step (lidocane, incision, needle insertion, drill, aspiration, and sample) the nurse pushed pain medicine. I felt a small sensation initially when he did the lidocaine (like a mosquito bite) and some pressure, harldy noticeable when he did the aspiration. the entire procedure was maybe 7 mins total. I was then wheeled into recovery where they got me something to eat, monitored me and my vitals then kicked me loose. for those having one done this is the way to do it! the last one I had was a nightmare but this time was a breeze. ask for moderate sedation! I’m a little sore today but because they used the CT it was accurate and only required one hole this time.

So I have noticed over the last two years that I have memory lapses and trouble with recollection. The upside is that I can watch the same shows over again like they are new lol! I frequently have gaps in my memory especially if I am relaxed and have had a drink or two. Not slammered just a couple of glasses of wine. My husband loves it because he can play dumb if he said or did something stupid and I don’t remember a thing other than the fact I’m pissed and don’t know why. Is this normal???

I have myelofibrosis. Grade 2 fibrosis. Taking Jakafi for 2 months now. My insurance made me go to the Mayo Clinic for a BMT consultation. I waited months and they didn't even have all of my records. I've heard Dr. Kukyendall is the top MPN expert in Florida. My appointment is in a few weeks.

20/M, I am quite young so naturally I was surprised that I needed to take HYDROXYUREA after the doctor explained it to me. It is to target my polycythemia vera and other concerns . So after my first dosage of 2 pills of HYDROXYUREA 500mg today I started to feel the side effects and searched up reddit. I stumbed upon some of stories on this thread/community post that HORRIFY ME like the common mouth ulcers, brittle nails, joint pain, neck pain, frequent nausea, hair thinning and many more. I may not be an active person but recently I've been more active after my psoriasis treatment (not related to the polycythemia) which makes me happy and confident. All I'm trying to ask is, does it get better later on taking this for a while? Since I don't want to go back to having to pre psoriasis treatment me and can't actively go outside again, does it get better?

Been having more symptoms, so the doc is changing me from jakafi to ojjaar (I believe that's what it's called). I just wanted to know if anyone is on that med and how it is for you.

Thanks!! 💜

I was diagnosed with Jak2 ET this year. 50F

I just had a BMB (awaiting results) and asked for my Von Willebrand Factor Activity lab to be redone because it was in the 50s last month, but I was on day 1 of my cycle. The test done last week showed 44%

What does this mean?

I am currently taking 1 baby aspirin per day.

I had asked about Pegasus, but was told there is a shortage, so the discussion would need to wait until there was no longer a shortage.

hey everyone, so my doctor just told me I have et (she talked to the hematologist) but the hematologist said that they won’t see me until my platelets have gone up & that it’s not an emergency (my platelets were 528 about a month ago) is this normal?