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MPN Voice

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At last I know.

Spoke to the doctor today and at last I know I have ET .I have fibromyalgia and the symptoms got my brain thinking it was MF. My white blood cells have been...

Spoke to the doctor today and at last I know I have ET .I have fibromyalgia and ...

mag123ben

•2 hours ago

1 Reply

Change in bone marrow fibrosis during mome or Rux therapy do not corelate with efficacy outcome to patient with Mylofibrosis

Here a new research published by MPN team lead by Dr. Ruben Mesa https://onlinelibrary.wiley.com/doi/10.1002/jha2.854 Hope it will useful Cheers

Here a new research published by MPN team lead by Dr. Ruben Mesa https://online...

william-Indo

•3 hours ago

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Burning hands and feet

Hi all the saga continues another heam at my local hospital!Well here goes they had me on 45 mg of interferon 3 times a week everything fine until 3 weeks ago...

Hi all the saga continues another heam at my local hospital!Well here goes they ...

Spanelmad

•5 hours ago

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How frequently do you see your MPN specialist?

Hi all, I'm curious to hear how often you see your MPN specialist and get your platelet level checked. My specialist recently suggested we go from follow ups...

Hi all, I'm curious to hear how often you see your MPN specialist and get your p...

ETinNYC

•13 hours ago

3 Replies

MF and natural epo levels.

Does anyone with MF get tested routinely for their natural epo levels? We have asked to have my wife's epo level checked at her next blood test opportunity,...

Does anyone with MF get tested routinely for their natural epo levels? We have a...

jointpain

•22 hours ago

2 Replies

Unexplained infertility

Hi I do wonder how many cases of unexplained infertility are actually due to undiagnosed ET and the blood clots that can develop. Is there any research...

Hi I do wonder how many cases of unexplained infertility are actually due to u...

Gipsy123

•1 day ago

1 Reply

Depression and peg interferon

hi all, does anyone with a history of depression have experience of using peg interferon? I suffer from what you might call “mild” depression but it’s...

hi all, does anyone with a history of depression have experience of using peg ...

Timjonze

•1 day ago

16 Replies

Sharp rise in platelets

Hi everyone. I’m getting a bit anxious and would appreciate any advice please. Three weeks ago my platelets were 569 having come down gradually over the last...

Hi everyone. I’m getting a bit anxious and would appreciate any advice please. ...

EdwinaJ

•1 day ago

13 Replies

Possible ET? Higher levels of Platelets for years

Hello, I found this forum after googling why my platelets have been consistently higher than reference range for years. I am 28, and my platelets have...

Hello, I found this forum after googling why my platelets have been consistently...

Creativeyellow

•2 days ago

8 Replies

Interferon impact on fertility

Hi everyone, Its been awhile since I've been on here . I would welcome your advice pls. I was diagnosed with Triple Negative-Essential Thrombesemia last...

Hi everyone, Its been awhile since I've been on here . I would welcome your adv...

Biscuitlove

•2 days ago

16 Replies

Question-New

Hi! So glad for this group. Have suffered with migraine since I was 8yo and have been treated for hypertension for over 13 years and I'm now 55. I have...

Hi! So glad for this group. Have suffered with migraine since I was 8yo and ha...

MPNJunebug

•2 days ago

12 Replies

magnesium supplements

Hi all It’s been a while since I posted on here. But I have a question regarding sleep. I have ET, Jak2, had it 7 years, and at the moment take aspirin and...

Hi all It’s been a while since I posted on here. But I have a question regardin...

Grumpyfairy

•2 days ago

9 Replies

Question For Hunter

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to get a specific diagnosis of which MPN I have. I saw a hematologist first, then...

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to...

Bikelove

•3 days ago

4 Replies

pulmonary hypertention

developed pulmonary hypertension after having phlebotomys

AllEars

•3 days ago

3 Replies

Jakavi advice please

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is...

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow...

Sivasi

•3 days ago

36 Replies

Frequent styes

I know that this is not a serious symptom, but I was just wondering if anyone else keeps getting styes. I seem to get rid of one and then a week later get...

I know that this is not a serious symptom, but I was just wondering if anyone el...

Pippapot

•4 days ago

10 Replies

Starting dose for pegasys?

Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of masked PV and we are now starting pegasys interferon, as i have had severe...

Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of mas...

Ninete

•4 days ago

10 Replies

Offer from MPN Advocacy Education for PV

MPN International looking for PV patients for research. Interest...?

william-Indo

•5 days ago

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Essential Throbocytosis and JAK2

Does anyone experience Shen pain. I do occasionally and was wondering if it had anything to do with the dx

Does anyone experience Shen pain. I do occasionally and was wondering if it had...

Preacherswife

•5 days ago

6 Replies

Getting ready for summer. Protection from sun and staying cool

Hi all, It will be my first summer on HU and I am a little concerned about how to protect my skin, now that it needs extra protection because of HU, and how to...

Hi all, It will be my first summer on HU and I am a little concerned about how t...

JustKeepSw1mming

•5 days ago

21 Replies

Hydroxycarbamide Dose

Thank you to every one that replied with help and advice regarding my question about the dose increase , it’s always so very helpful to ask questions on here...

Thank you to every one that replied with help and advice regarding my question a...

Yoganana1

•6 days ago

2 Replies

Myelofibrosis

If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://thebloodline.org/TBL/165e165/ Cheers

If you have MF, this link to Naveen P MD from MD Anderson maybe useful https://...

william-Indo

•6 days ago

4 Replies

triple negative pre-fibrotic primary Myelofibrosis with SH2B3 mutation

Hello, I hope everyone in here is doing well with high spirits! Let me start by saying this diagnosis had spiked my anxiety to the point where it’s out of...

Hello, I hope everyone in here is doing well with high spirits! Let me start b...

Dekou

•7 days ago

11 Replies

E.T. and Headaches.

For the past ten days or so I’ve been having really bad frontal headaches forehead, behind the eyes and over the front of head which seem to come from back of...

For the past ten days or so I’ve been having really bad frontal headaches forehe...

azaelea

•7 days ago

18 Replies

Tablets on holiday.

Found out if on holiday and you need extra tablets, you need to go to a (big) chemist. One that has a form. FP,57 you need that as you get your tablets. I...

Found out if on holiday and you need extra tablets, you need to go to a (big) ch...

mag123ben

•7 days ago

1 Reply

Leg ache. ET or unrelated?

These days my lower legs ache all the time. They ache regardless of whether im active or inactive. Do you think this ET/MPN related or something else...

These days my lower legs ache all the time. They ache regardless of whether im a...

BloodZero

•7 days ago

34 Replies

Variants

Variants About 6-7 weeks ago I transferred from my local hematologist to an MPN specialist - a move I feel really good about. She has done some different...

Variants About 6-7 weeks ago I transferred from my local hematologist to an ...

BeOutside

•8 days ago

15 Replies

Palbociclib for MF reducing fibrosis and more

I found this subject inspired by a dead post in the Sjogren's forum. "The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing...

I found this subject inspired by a dead post in the Sjogren's forum. "The drug,...

EPguy

•8 days ago

4 Replies

Hydroxycarbamide

I have been on Hydroxycarbamide since January 2018 500mg tablets two a day Monday -Friday 3 on Saturday and Sunday. Recently I have experienced discomfort in...

I have been on Hydroxycarbamide since January 2018 500mg tablets two a day Monda...

Edinburgh1953

•8 days ago

14 Replies

Hydrocarbonide safety

my husband has recently started hydrocarbonide 500mg daily. What measures does he have to take if any to protect me from this drug. At the moment he feels as...

my husband has recently started hydrocarbonide 500mg daily. What measures does ...

Collie123

•8 days ago

4 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

At last I know.

Change in bone marrow fibrosis during mome or Rux therapy do not corelate with efficacy outcome to patient with Mylofibrosis

Burning hands and feet

How frequently do you see your MPN specialist?

MF and natural epo levels.

Unexplained infertility

Depression and peg interferon

Sharp rise in platelets

Possible ET? Higher levels of Platelets for years

Interferon impact on fertility

Question-New

magnesium supplements

Question For Hunter

pulmonary hypertention

Jakavi advice please

Frequent styes

Starting dose for pegasys?

Offer from MPN Advocacy Education for PV

Essential Throbocytosis and JAK2

Getting ready for summer. Protection from sun and staying cool

Hydroxycarbamide Dose

Myelofibrosis

triple negative pre-fibrotic primary Myelofibrosis with SH2B3 mutation

E.T. and Headaches.

Tablets on holiday.

Leg ache. ET or unrelated?

Variants

Palbociclib for MF reducing fibrosis and more

Hydroxycarbamide

Hydrocarbonide safety

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