Posts - MPN Voice | HealthUnlocked

MPN Voice

11,270 members•15,748 posts

All posts for April 2025

PV itching

Hi , I got diagnosed with pv in 2023 , though I had symptoms of being very tired n the itching arround 2020 , now after few phelebotomies and dieting I’m...

Hi , I got diagnosed with pv in 2023 , though I had symptoms of being very tired...

•11 hours ago

Jakafi and mood changes

Hi I have recently changed from Peg Interferon to Jakafi and I am struggling with side effects . I have taken Peg for around 10 years and it suited me well....

Hi I have recently changed from Peg Interferon to Jakafi and I am struggling ...

•1 day ago

pv and bullous pemphigoid

Diagnosed with pv 3 years ago. Taking Hydroxycarbamide. Now developed watery blisters on my legs from ankles to upper thigh. Thought at first that I had...

Diagnosed with pv 3 years ago. Taking Hydroxycarbamide. Now developed watery...

EastYorkshireman

•3 days ago

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Myocarditis

Good morning all I haven’t posted before but thought now was a good time. I was diagnosed with PV JAK2 positive in December 2022 when I was 61. Up until...

Good morning all I haven’t posted before but thought now was a good time. I was...

•3 days ago

Should I or should I not?

Hi there. I finally got results from my BMB. Although I had another one last September and they both don't say anything about progression or myelofibrosis. On...

Hi there. I finally got results from my BMB. Although I had another one last Sep...

•3 days ago

HealthTree Webinar- Newly Diagnosed with Myelofibrosis? Key Things to Know

Hi again everyone, It seems that people have enjoyed me posting upcoming HealthTree webinars to this group so I wanted to let you all know of the next...

Hi again everyone, It seems that people have enjoyed me posting upcoming Healt...

•4 days ago

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Another update!

I’ve now spoken to the senior clinical nurse, she went through all my symptoms and concluded as I feel so much better this afternoon, and have kept the toast I...

I’ve now spoken to the senior clinical nurse, she went through all my symptoms a...

•4 days ago

polycythemia vera

am searching for a new hematologist/oncologist in the Philadelphia area. any suggestions would be welcome. thanks!

am searching for a new hematologist/oncologist in the Philadelphia area. any su...

•4 days ago

increased platelets

I was diagnosed with ET in November 2019 after being diagnosed with a blood clot on my brain and JAK 2 + result, I take 500mg of Hydroxycarbamide daily,...

I was diagnosed with ET in November 2019 after being diagnosed with a blood clot...

•4 days ago

Update - sort of

I phoned the clinical nurse early this morning, unfortunately it was the one who never does anything that answered. I told her how I felt, vomiting, spleen...

I phoned the clinical nurse early this morning, unfortunately it was the one who...

•4 days ago

Transplant Update - Day -7

It’s all going ahead! I had my Hickman line inserted today and will be starting conditioning tomorrow with a dose of Melphalan. Feeling a mix of emotions, but...

It’s all going ahead! I had my Hickman line inserted today and will be starting ...

•4 days ago

Hydroxyurea and Levothyroxine

I'm new to taking Hydroxyurea. Diagnosed with MPN a couple weeks ago. My dilemma is that I have had a complete thyroidectomy and need Levothyroxine daily....

I'm new to taking Hydroxyurea. Diagnosed with MPN a couple weeks ago. My dilemm...

•4 days ago

NCA033989 Trial - 4th Infusion Update (ET+CALR1)

I'm happy to report that my fourth infusion last week went smoothly. My bloodwork came back with a platelet count holding steady at 256,000, and all other...

I'm happy to report that my fourth infusion last week went smoothly. My bloodwor...

•5 days ago

Spleen pain?

Yesterday (Monday) I was vomiting from 5 am, after a while there was nothing to bring up so I was heaving on am empty stomach. I am prescribed anti sickness...

Yesterday (Monday) I was vomiting from 5 am, after a while there was nothing to ...

•5 days ago

Tiredness coming off Hydroxy?

Hi all, first time poster :). My husband (55) has the CalR mutation, diagnosed 8 years ago, but we weren't given any information about it until we moved to the...

Hi all, first time poster :). My husband (55) has the CalR mutation, diagnosed 8...

•6 days ago

Itching issues

Hi fellow members, would appreciate some ideas! Had Polycythemia 14 yrs .On the whole, under control. However recently , pruritis has been out of control ....

Hi fellow members, would appreciate some ideas! Had Polycythemia 14 yrs .On th...

•7 days ago

Update on My Transplant Journey

Hey everyone, it’s been a while — just wanted to share the latest update. Unfortunately, the international donor who was a match has pulled out. The next...

Hey everyone, it’s been a while — just wanted to share the latest update. Unfort...

•8 days ago

Dieting on ruxolitinib

Hi how's things with everyone can anyone advise on dieting when you have pv and taking rux been on rux for 5 months seem to lose weight then very quickly...

Hi how's things with everyone can anyone advise on dieting when you have pv an...

Squirrelnuts403

•9 days ago

Part time HU..?

It’s a strange question but does anyone taking HU have rest breaks from the med? Quick background to my random question - I was diagnosed with ET/MLR in...

It’s a strange question but does anyone taking HU have rest breaks from the med?...

•9 days ago

Besremi - Travel refridgeration cases

Hi, Could anyone recommend any good travel refridgeration cases that would fit a Besremi pen? Thank you.

Hi, Could anyone recommend any good travel refridgeration cases that would fit a...

•10 days ago

significant blood changes

hi all I haven’t often posted about my own situation but am now looking for some insights and possible directions. Background is Post ET MF stage 2 diagnosed...

hi all I haven’t often posted about my own situation but am now looking for some...

•10 days ago

significant blood changes

hi all I haven’t often posted about my own situation but am now looking for some insights and possible directions. Background is Post ET MF stage 2 diagnosed...

hi all I haven’t often posted about my own situation but am now looking for some...

•10 days ago

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Bone marrow biopsy

Hi, i got my results and thankfully I have not progressed. Still have PV. I cried a lot about it due to my new doctor who told me I was in denial and I must...

Hi, i got my results and thankfully I have not progressed. Still have PV. I cr...

•11 days ago

BMB results

I met with MPN Specialist today to review my bone marrow biopsy findings. Overall, very reassuring report: 1. Diagnosis confirmed: Essential...

I met with MPN Specialist today to review my bone marrow biopsy findings. Overal...

•11 days ago

Platelets dropped to 100 and PVC dropped to 26.9% Looking for thoughts and advice.

good morning all My Platelets count dropped gradually to 100 (now)below 150-450 and PVC ( equivalent to Haematocrit) dropped to 26.9% well below accepted...

good morning all My Platelets count dropped gradually to 100 (now)below 150-450...

•12 days ago

Pre diabetes?

I think I’m very lucky so far with my ET Journey, no real side effects except itching and tiredness. However, Just a couple of moans from me today I’m afraid....

I think I’m very lucky so far with my ET Journey, no real side effects except it...

•12 days ago

HealthTree Roundtable- How Myelofibrosis is Staged

Myelofibrosis Event! This Friday from 2:30- 4:00 PM Eastern Time, the HealthTree Foundation will be hosting a Roundtable webinar with Dr. Lucia Masarova, Dr....

Myelofibrosis Event! This Friday from 2:30- 4:00 PM Eastern Time, the HealthTree...

•12 days ago

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