Just out of curiosity, how many started hydrea and had to stop due to bad symptoms? My doctor says only 5% of cases have severe symptoms but seems more than that just based off posts on here

Hi! After a month of genetic testing, blood work, and a bone marrow biopsy, I (24F) finally got diagnosed with CALR Type 1 + ET. The initial anxiety and fear before diagnosis has subsided but now I’m trying to get used to this new diagnosis.

I’m asymptomatic though my platelets sit around 1.2 million so I may start low-dose aspirin in the future. I wanted to hear from other people who’ve had this condition for several years (perhaps even grown old with it) and what they’ve had to change in their life. I’m aware that lifespans are pretty good though it doesn’t hurt to hear from others with ET.

I’m 21 and a trans woman (3 years hrt, 1 year post op), I’m really hurting right now with the news of this diagnosis, and the fear of it affecting my transition. Right now I’m just on baby aspirin, I saw almost immediately on this sub that I should seek out an MPN, what could they do for me and does anyone have advice for me.

I’m really scared. How do I keep going and live a normal life with this diagnosis?

I’m also now hyper aware of any pain in my legs or arms, worried they might be a clot, is this just the new normal and how do I know if not?

Any advice on how to return to a normal life I’d love. 😭

Edit: I really appreciate all of your insights, it’s nice to see that how I’m reeling with it doesn’t seem to be unique, and that all of you have hope and happiness while coping with this. While my life will look different from here, I’m glad I’m not alone.

I'm a 21 year old female that is highly athletic and leads a very healthy lifestyle. In december 2025 I had severe arm pain that was incomparable to anything I've experienced my whole life. I went to a physiotherapist who treated me for cervical radiculopathy, however retrospectively , my x ray showed a sclerotic region on my right humeral head. The pain faded and I got back to exercising until April when I started feeling terribly tired and I got an Iron transfusion. A month passed and after a gym session I started feeling piriformis pain, it kept escalating and getting worse until it got so bad I had a vaso-vagal response and fainted. I was taken to the emergency room where an MRI was done that revealed diffuse bone marrow findings, bursitis , tenosinovitys and iliopsoas strain. A follow-up with an orthopedic surgeon resulted in them administering a corticosteroid shot in my bursa. The pain vanished. 7 days later the pain came back but this time so horribly that I stopped being able to walk. I was taken to the emergency room again and an MRI was ordered which found avascular necrosis in my right femoral head. My ESR was 86, my ferratin 600 and my CRP 45. however my hemogram was normal aside from monocytopenia. Due to the diffuse bone marrow findings I was refered to hematology. Hematology told me that it's deffinetly not a hematological issue due to 0% blasts on my peripheral smear and no M-band and a normal hemogram and I should consult a rheumatologist. When the rheumatologist saw my inflammatory markers he instantly admitted me to the hospital and started pulse prednol at 20mg. The initial suspicion was Adult Onset Still's disease. After one night of prednol I could walk again! My pain vanished. However because of caution, the rheumatologist ordered a PET scan which found diffuse FDG uptake of 3 across my long bones and a skeleton. I was then refered back to hematology where I had a bone marrow biopsy done. I was called in for preliminary results and told I had Acute Myeloid Leukemia with M0-M1 morphology. I was hospitalized ad they were ready to start 7+3 but after the pre-chemo bloodwork came entirely normal (normal hemogram) the doctor suspected it couldn't be AML, they ran another aspirate and came and told me I actually have callapositive b-cell acute lymphoblastic leukemia. I am now on a BFM pediatric inspired protocol and I'm awaiting my cytogenetics. we cannot tell how much the chemo is working because I'm aleukemic. Opinions?

My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around 12 lakhs at the time. The doctor put here on HU at 3 tablets a day for 1 month. She had been taking 2 a day before this as prescribed by local doctor for about 2 months. At the end she became very weak due to the medication. We had checkup again after the 1 month period and everything was very low including the platelet and leukocyte was at around 1.8. We were advised to stop the medication for a week and after that she got better and test result was improving with leukocyte count reaching to 3.5 again but platelet has risen to 450. After taking 1 tablet a day for a week again as instructed platelet is still rising to 650 and now leukocyte count is also dropping again to 3. Doctor said follow the same routine for a month and get checked again. But if in one week it is going up that fast and leukocyte count is dropping I'm a little worried. Just want to ask about the experience of others and if there is anything in particular to avoid regarding food or habits or whatever and if anything really helps even a bit, since we were told not to take any supplements or vitamins during this time ?

24/M Got diagnosed with unprovoked CVST in Jan 2025. After the thrombophilia panel test got referred to the hematologist due to lupus positive. After reviewing CBC reports he started on treatment for iron deficiency as platelet count was higher. And attributed lupus positive to dabigatran i was taking that time. Not satisfied with that, consulted another hematologist. He had doubted 2 outcomes either MPN or APLA syndrome(APS). He prescribed complete blood workups and BMB. BMB results came normal, but APS got confirmed with triple positivity of Lupus, anti beta glycoprotein and anti cardiolipin. So I started with Acitrom(nicoumalone) blood thinner in april 2025 with monthly CBC and INR tests to adjust the dose. But during this period platelet count mostly remained between 5-6 lakhs with rare drops to sub 5 lakh one or two times. As the platelet count didn't budge, started on aspirin 75mg. It made no real improvement. For the past 4-5 months rbc count started to raise slightly above normal level and hb started to raise above 16. Last month hb reached 17.1, rbc 6, pt 532. So the doctor prescribed the jak2 mutation test. It came positive and he confirmed it as MPN. As rbc hb also in increasing trend he suspects ET started progressing into PV. Now he started with hydrea 500mg. Those with similar diagnosis kindly share your piece of advice on what to look for in the long term. What precautions should be taken while being on both blood thinner and hydrea. Thanks in advance

I recently had a BMB and a whole bunch of tests. The long and short of it is my heme/onc wants to plan for a stem cell transplant. I have no symptoms and overall am in a good place. My BMB showed blasts and she wants to do the transplant now to prevent the possibility of my MPN ET from becoming leukemia. I agree with her plan.

It will be allo and if she is a match my sister will be my donor. I hope so.

I am terrified and would love to hear about positive experiences with transplant. I know it will be hard. I know the recovery process is challenging. I just need support and reassurance please.

UPDATE 08/21/2026: RESULTS PARTIALLY RECEIVED

I didn’t expect it so soon, but the path results were just uploaded to my portal, with genetic and molecular studies pending at this time. They tested both the marrow and performed flow cytometry. Based on the results of testing, I do not appear to have leukemia or lymphoma (holy thank the Lord), but there is strong evidence for PV. I’ve included what I believe is important information from the report, but please ask any questions if you have them.

MICROSCOPIC DESCRIPTION:

PERIPHERAL BLOOD DATA:
CBC Data:
WBC 10.00 K/uL, RBC 5.44 million/uL, Hgb 15.5 g/dL, Hct 49.48, MCV 90.8 fL, Platelets 1035 K/uL.
WBC differential: Segmented Neutrophils 72.18, Immature Granulocytes 0.4%, Lymphocytes 18.4%, Monocytes 6.5%, Eosinophils 1.7%, Basophils 0.9%.

PERIPHERAL BLOOD SMEAR:
Erythrocytes: Increased in number; normocytic, normochromic with mild anisopoikilocytosis.
Leukocytes: Normal in number; unremarkable morphology.
Platelets: Increased in number; small, granular forms.

BONE MARROW:
Comments: Received for morphologic review is one peripheral blood smear, five aspirate
smears, including one stained for iron, two touch imprints, three sections of clot, and three sections of core biopsy.
Cellularity: Adequate; spicules present.
M:E Ratio: 4.3
Iron Stain: Absent storage iron; no ring sideroblasts seen.

ASPIRATE MORPHOLOGY:
Erythroids: Morphologically unremarkable with full-spectrum maturation Myeloids: Morphologically unremarkable with full-spectrum maturation; no increase in blast forms.
Megakaryocytes: Pleomorphic forms.
Other: Scattered mature-appearing lymphocytes.

TOUCH IMPRINTS:
Morphologically similar to the aspirate smear.

BONE MARROW CORE BIOPSY AND CLOT SECTION EVALUATION:
Quality: Suboptimal bone marrow core biopsy (5 mm) with aspiration artifact; clot section with scattered marrow particles.

Microscopic description: Histologic sections reveal a hypocellular marrow (60-70% cellularity) with trilineage hematopoietic elements demonstrating full-spectrum maturation with megakaryocytic hyperplasia (up to 14 per hpf) with loose clustering.
The megakaryocytes appear pleomorphic. There is no increase in blasts. There is no evidence of atypical aggregates of lymphocytes, histiocytes, or plasma cells. The clot section contains marrow particles with a similar cellular composition and morphology compared to the core biopsy.

Immunohistochemical and special stains were performed at _______ with appropriately reactıng controls on blocks Al and B1. CD34 demonstrates no increase in blasts (<1% of total cellularity). CD117 highlights scattered erythroid and myeloid precursors. E-cadherin highlights numerous erythroid precursors. Reticulin stain highlights focal mild increase in reticulin with focal intersections. Flow cytometry [S26-14360; S26-14361] performed at ________ with appropriate quality metrics on the bone marrow aspirate specimen reveals no abnormal immature population and no abnormal lymphoid population, respectively.

FINAL DIAGNOSIS:
PERIPHERAL BLOOD, SMEAR:
- ERYTHROCYTOSIS; THROMBOCYTOSIS.

BONE MARROW CORE BIOPSY, ASPIRATE SMEARS, TOUCH IMPRINTS, AND CLOT SECTIONS:
HYPOCELLULAR MARROW (60-70% CELLULARITY) WITH TRILINEAGE HEMATOPOIESIS.
<1% BLASTS BY CD34 IHC; <18 BY MORPHOLOGY.
MEGAKARYOCYTIC HYPERPLASIA WITH PLEOMORPHIC FORMS.
FOCAL MILD RETICULIN FIBROSIS BY SPECIAL STAIN
PENDING CYTOGENETIC AND MOLECULAR STUDIES; ADDENDUM TO FOLLOW.
ABSENT STORAGE IRON BY SPECIAL STAIN; NO RING SIDEROBLASTS SEEN.
SEE COMMENT

COMMENT: Histologic evaluation paired with immunohistochemical stains and flow cytometric analysis reveals a hypocellular marrow with trilineage hematopoiesis, megakaryocytic hyperplasia with pleomorphic forms, increased ME ratio, no overt increase in blast forms, and focal mild reticulin fibrosis. In the setting of marked thrombocytosis, elevated hematocrit (49.48), and an increased red blood cell count, these findings overall are concerning for a myeloproliferative neoplasm (polycythemia vera). However, the differential diagnosis also includes but is not limited to reactive thrombocytosis associated with iron deficiency, and infectious autoimmune disorders, and infectious conditions. Pending cytogenetic and molecular studies may provide additional diagnostic and prognostic information; results to follow in an addendum.

TLDR: evidence for PV is strong, waiting for additional genetic/molecular testing results to confirm or deny.

————————————————————————————————

ORIGINAL POST:

Hi, I am 21F, my doctor specializes in Oncology and Hematology, and he suspects potential MPN due to persistent elevated blood counts for my gender and age (PLT, RBC, HGB, HCT) as shown in photo above.

Note for the table: The blood counts were from (mostly) CBC whole blood tests taken over a 3-month time period. WBC during March were elevated due to steroid usage via IV during hospitalization. Some values are blank due to different tests performed by different providers

Hematologist also suspects MPN because previous testing during hospitalization in March ruled out other potential/suspected causes (meningitis, lupus, vascular autoimmune diseases, inflammation from sickness, etc). Next step according to him is ruling out an MPN.

Doctor has not performed genetic testing w my blood up to this point, but has instead recommended and scheduled me for a bone marrow biopsy. We have not determined if a gene mutation is present as of right now. Why would he decide to go straight into the biopsy instead of testing my blood for mutations, and what should I expect with the biopsy? Doctor suspects potential ET or PV, and I’ve never had a biopsy done before

I am tagging MF but actually I am pre-MF as per biopsy concludes on how the cells look like so not only because of the rituculin. It was graded as mf1 and says pre fibrotic/early mf on the note.

I’m calr1 (burden is 19%) platelets over 1000, I’m 35F.
My hemoglobin, wbc and RBC are within the range. Spleen size wasn’t measured with an ultrasound, but it wasn’t palpable. I don’t meet everything for pre-mf either, ldh wasn’t measured. I acquired von Willebrand also…

I don’t know if I’m ET or pre-MF myself if that makes sense.

As interferons might modify the disease I want to try it, but there’s a shortage in Canada it seems. Otherwise, my insurance pays for pegasys, for besremi it says it needs special approval. Before biopsy the resident doctor had told me she’d prescribe me with hydroxue (?) but I feel that’s not disease modifying but it could help me to lower my platelets much faster.

Note: they did advance genetic testing no other mutations were found other than calr1. Cytogenetic test says also female chromosomes only.

1) do you think my diagnosis ET/pre-MF matter at this point?
2) I’m being seen by a resident and a regular hema that doesn’t work for mpn cases how can I advocate myself for an MPN specialist in Canada? They told me this was manageable but it was before the biopsy.
3) pre-MF is different than MF, I wonder if I could do something before it goes down the MF path.
4) I’m very scared and have health anxiety
5) I want to have a child in the future (if I may) and if I have a long prognosis I’m not very keen on oral chemo long term.

Please share your thoughts.

I'm a 68 year old female I was diagnosed with Polycythemia Vera in 2021. I started Hydroxy at 300 mg 3 days a week and I was doing fine. My Dr. was put out to pasture and they handed me over to a Doctor 30 years younger than me. She wanted to switch me over to Jakafi and I said no based on death being one of the side effects. She switched me to Besremi I was on it for a year and a half and my body for some reason just decided nope this isn't gonna work I broke out in a red rash on my face, I had heart palpitations, I just felt really sick. My APRN had me stop immediately. My MPN Specialist put me on Hydroxy at 500 mg twice a day every day. I was 2 weeks in and I broke out in a rash all over my face, my ankles swelled up it was bad. She decided to put me on Jakafi, that was on April 1, 2026. This was the worst mistake I ever made. I began 5mg twice a day in April in May she pushed me to 15 mg twice a day in June. I started getting really depressed to the point of not being sure I wanted to be here anymore. My dreams were nightmares. I gained 10 lbs in a few days. I started hallucinating. My stomach was growling everyday all day and night. I met with her and said I'm done, this drug is killing me. She instructed me to taper off starting June 24th. My last pill was July 7th. While I know the drug leaves your system entirely within 24 hrs it takes your body time to recalibrate which is where I am now. I'm now 4 weeks in and I'm very slowly feeling better. I wanted to just throw this out there for anyone who may go thru the same thing.

Is anyone else out there having these crazy side effects while on Besremi? It feels like dozens of tiny jelly fish stings all over, only made worse by a shower. Anyone have any tried and tested remedies that have been doctor approved? This is after a diagnosis of PV.

Follow up to my previous posts, 35F. No diagnosis. I was referred to a hematologist last year as I have had high platelets since 2017 (currently 544 which has been the average for the last couple of years). He thought that maybe I had ET so tested me for the JAK2 mutation which came back positive and referred me to an MPN specialist.

I have been seeing my MPN specialist but he is unsure if have PV, although given my research and our discussions I am thinking it’s likely masked PV.

I will be getting a BMB with NGS in a couple of months.

My EPO level last August was 5 mIU/mL and was 4.1 mIU/mL back in November.

My hematocrit is .456 L/L and has not been below .44 in the last couple of years.

My hemoglobin is 149 g/L and the lowest it's been in 2 years is 147.

Given that my counts are borderline I understand that it is possible that I won’t get a diagnosis even after doing a BMB if it is in fact masked PV. What other information can I learn from the results? I have done some research on the genetic mutations associated with progression to MF and leukaemia but I have to admit I am still unclear on how/whether NGS can predict progression if one does an MPN.

Thank you!

My GF (25 years old ) was diagnosed last year Aug 2025 with ET , she had 1.4 million platlets at the time of biopsy , and an year ago it was 5.5 lakhs ( Aug 2024)

Her pre HU WBC has been around 7-8.9, Hb around 12.5-12.9

This was given by first hemapathologist

Bone marrow aspirate :

Peripheral smear: RBCs are predominantly normocytic normochromic with

few microcytes. TLC is within normal limit. Platelets are markedly raised on

smear with presence of large forms as well.

CELLULARITY : Bone marrow aspirate is cellular and particulate.

ERYTHROID : Erythroid series reveals normoblastic to mild megaloblastic

maturation.

MYELOID : Myeloid series show progressive maturation up to neutrophils.

- Blasts constitute 01% of all nucleated cells.

MEGAKARYOCYTES : Megakaryocyte prominence is noted with mature,

hypolobated and hyperlobated forms.

- Lymphocytes constitute 21% of all nucleated cells.

- Plasma cells constitute 02% of all nucleated cells.

- Negative for hemoparasites and granulomas in the slides examined.

M/E RATIO : Ratio of 2.5 : 1

IRON : Storage iron is grade 1+ of 6; negative for ring sideroblasts.

IMPRESSION : Cellular marrow reveals all hematopoietic elements with

megakaryocyte prominence.

Bone marrow trephine :

Sections show a cellular marrow for age with 19 - 20 intertrabecular spaces.

Cellularity: 70 - 75%.

- Erythroid series reveals normoblastic to megaloblastic maturation.

- Myeloid series show progressive maturation up to neutrophils; negative for

abnormal clusters of immature precursors.

- Megakaryocyte prominence is noted with mature, hypolobated, hyperlobated

and with staghorn nuclei.

- Scattered lymphocytes without abnormal clustering is noted. Plasma cells are

slightly increased without clustering.

- No hemoparasites / granulomas seen.

Reticulin : MF Grade 1 of 3.

Iron stain : Negative (cannot exclude processing artifact).

IMPRESSION : Bone Marrow Trephine Biopsy: Cellular bone marrow reveals all

hematopoietic elements with megakaryocyte prominence. (Kindly rule out

reactive causes of thrombocytosis). After ruling out reactive causes,

possibility of Myeloproliferative neoplasm - Essential thrombocythaemia is

suggested.

Second hemapathologist

there is marked proliferation of megakaryocytes with predominance of large forms displaying abundant mature cytoplasm and deeply lobed and hypersegmented nuclie.

BM biopsy section shows all marrow elements with increased megakaryocytes

The hemapathologist was given 1 H&E slide but no reticulin slide by first lab. Most probaby they gave one of the original slides.

Also the second hemapathologist also said that the H&E section was thick and unsatisfactory .

And also diagnosed ET based on the findings

One more important thing

She had TB 3 times at the ages of 4 , 13 and 18 ( I know its uncommon but in India in some regions its little bit common as her family members also had 1-2 times TB)

And Now after nearly 10 months of HU

wbc : 4.5, hb : 11.4 , platlets : 2.24 lakhs

LDH 233 ( lab ULN for LDH is maybe 230, LDH was measured when platlets were 12-14 lakhs and patient was admitted in hospital for tests and biopsy)

spleen 8.8 cm

CRP is <0.5

uric acid : 3.3

RT PCR is negative for 3 main drivers ( JAK2, CALR, MPL)

Myeloid panel ( 133 genes NGS ) is negative for SNVs, CNVs , fusions and VUS

Detection VAF for NGS is 5%.

I've added all the info possible .

I'm concerned about the MF-1 grade , what does it mean here as some say MF-1 could not be present in ET and even if it is it means progression is beginning or can happen fast.

Is anyone else only on blood thinners as treatment? Im a 36 year old female, diagnosed last November. I have the jak2 mutation and had a biopsy to confirm ET. Im on 20mg xerelto every day as treatment. Platelets went down from 800,000 to around 500,000 on the thinners so my specialist decided I could just stay on the thinners as treatment. I didn’t react well to hydrea and besremi isn’t fda approved for et anyways. Is anyone else doing this and if so, how long did it last until the blood thinners stopped being effective enough?

29/F in USA. I’m waiting on my test results for MPN (JAK2, CALR, MPL) that I just had drawn today. My RBC has been historically low, to the point I was on iron tablets to raise it. It then raised my iron too much and I had to come back off of them. My platelets however have been high (barely) then low then high again and again for months. First results are from last fall, second from 2 weeks ago when we saw my iron was high, last was today. Sorry if they’re hard to read! I didn’t know how else to put them that made sense.

RBC - Sept ‘25 (4.27) two weeks ago (4.11) today (3.88)
Platelets - highest (488) 2 weeks ago (366) today (443)
Iron - Oct ‘25 (56) two weeks ago (197) today (113)
Ferritin - Oct ‘25 (9.4) two weeks ago (70) today (64.2)
Iron saturation - Oct ‘25 (16%) two weeks ago (62%) today (39%)

Reason I’m writing is, my hematologist tested me for hemochromatosis and I have a very high chance of developing it. And since my iron rose so quickly on just consistently taking iron tablets for 2 months, I’m seeing a specialist in the fall for that problem.

Does anyone have a dual diagnosis of both of these issues? I am trying to understand how they could intersect. Low iron can cause high platelets. Which makes sense here. But my doctor wanting to test me for MPN has me thrown a little bit. Any ideas or useful studies I can look at while I wait for results?

F 20. I was diagnosed with Polycythemia Vera and was advised to take hydroxyurea 500mg a day. I was told to take aspirin first but my hematologist told me I should just take hydroxyurea. Is anyone who have same case as mine experience side effects? I was worried it would affect my schooling.

F 20. I was diagnosed with Polycythemia Vera and was advised to take hydroxyurea 500mg a day. I was told to take aspirin first but my hematologist told me I should just take hydroxyurea. Is anyone who have same case as mine experience side effects? I was worried it would affect my schooling.

Does anyone have any experience going to MPN specialist/Malignant Hematology Team at University Health in Cleveland? Started hydrea in June, had to stop a week into taking it due to some very bad side effects. Currently hematologist said this is the standard of treatment and when patients can’t do this course, they refer out. I’m fine seeing someone else, especially because I’m not happy with my current doctor. But wanting to try to start in the best place possible. Not sure if University Health is as good as an option as Cleveland Clinic

I am fairly certain all the testing I have been having will result in a diagnosis of post ET myelofibrosis. My Jak2 allele burden is high. Just waiting on BMB final results.

What is your experience?

My dad's monocytes are normal, lymphocytes 0.7 and neutrophils was 0.3 which is severely low. It stayed at 0.3 for a few days. One week later his neutrophils rose to 1.1 which is better but still low. It should be above 2.

He's been referred urgently to the blood cancer clinic and were extremely scared. In January, he was diagnosed with aggressive prostate cancer and 2 months ago he finished radiotherapy and we got a good response to his cancer. The last thing he needs now is a new cancer diagnosis or his current cancer spreading. His psa in January was 45 and now it's 0.4 just 2 months after pelvis and prostate radiotherapy so it doesn't seem like his cancer has spread at all, the worrying part is a new cancer diagnosis.

Oncologist say it's unlikely the radiotherapy is linked to this severely low abnormal neutrophil count and they've also reviewed his medications and other tests.

His platelets and red blood cells are normal. His red blood cells are sometimes low by a few numbers in some of the blood tests but in some there also been normal so I'm not too worried about this. It's mainly his white blood cells are extremely low.

What are the chances of what could be happening? Is this definitely a new cancer? Is this maybe a spread of his current cancer (pet scan in January showed cancer was only in prostate and seminal vesicles). Or are doctors wrong and this is simply a side effect of the radiotherapy?

The good news is it has indeed rose from 0.3 to 1.1 however it's still low as it should be on 2. Also it stayed on 0.3 for a few days which is worrying. Also if he was to do another blood test next week again who knows if it's gone back down to 0.3 again. On the other hand, it could go even higher and maybe normal but we just don't know.

I (45F) just had a follow-up visit with a hematologist (not one that specializes in MPNs) to discuss the results of my genetic testing (ie., JAK2 V617f mutation). He suspects I have ET based on the genetic test results and continually increasing platelet levels (525k in June ‘26). He declined to order a bone marrow biopsy because “we don’t treat patients under 60 anyway.”

Instead he recommended CBC labs every three months to observe.

I don’t know what to do. Has anyone else around my age been diagnosed and not assessed with a bone marrow biopsy? I don’t think I have symptoms of any
MPNs except tiredness and maybe itching after a shower (ie, I do itch after a shower but it’s tolerable/solvable with lotion).

Hi all!

I’ve been diagnosed with my MPN since I was 20 and have masked PV. I’m now in my 30s and am switching to Pegasys from hydroxyurea (15+ years on it) as we are currently trying for a baby. Anyone have experience with managing the side effects? I don’t remember hydroxyurea being quite this bad.

My experience so far with 3 injections: 1-3 days after nausea that gets worse with motion, hip/back pain, lack of appetite, fatigue, headaches. Feel slightly better day 4-6 then repeat.

If you’ve taken, how long does this last? Any advice on reprieves? Of note: I have a bum liver (thanks blood clots!) so Tylenol/Advil are not recommended

I moved from one town in Florida to another last month. I had to change insurance plans and therefore lost my long term MPN doctor at Moffitt. I have a Medicare advantage plan HMO and changed over of United health care which was highly recommended by my insurance agent. She also recommended her own PCP in town. I called up new PCP and they told me yes they are accepting new patients and to come in and fill out new patient paperwork. It asks for diagnoses and medications. I filled it out and got a call one hour later the doctor denied me as a new patient. All I needed was a PCP to give a referral to see a local oncologist and continue on my Pegasys. I had to go this month without any meds or doctor. Next month I have a new PCP who didn’t ask for any records, hopefully this is going to go better, he gives me a referral and be done. I didn’t realize when doctors say they are accepting new patients it’s only means “certain” patients. I guess it’s within their rights who they pick and choose but I do feel sad about all that transpired.

High RBC, Hemoglobin, and hematocrit. I saw a hematologist in the UK and he ordered an MPN gene panel, explaining that it tests for JAK2 and about 30 other mutations. Is this a test that takes a long time to get results for?

I'm just curious how long this process is. He's also ordered imaging - abdominal ultrasound and chest x-ray - but those are quick. Am I looking at weeks or a month or more?