Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,388 posts

All posts for March 2023

one with people with secondary polycythemia

I am healthy overall ,I eat healthier foods ,don,t smoke and walk 2-3 miles every day. In 2017 was diagnosed with too manny red blood cells and high...

I am healthy overall ,I eat healthier foods ,don,t smoke and walk 2-3 miles ...

Scotch-Irish

•1 year ago

4 Replies

HU to Peg Transition Problems -

Hello I am asking for help with difficulties I am having transitioning from hydroxyurea to Pegasys. I am 58, male, CalR-ET, diagnosed in 2008, started HU in...

Hello I am asking for help with difficulties I am having transitioning from hyd...

LongETinUS

•1 year ago

13 Replies

Serum Ferritin

After reading transporter's post re serum ferritin levels, I can't see that I am given these results on my usual 6 weekly visit to the hospital - none of the...

After reading transporter's post re serum ferritin levels, I can't see that I am...

Roxanne22

•1 year ago

10 Replies

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Peg interferon

Hello Everyone,Been quite a while since being on here. Hope you're all doing well. Just some advice please. Am on peg interferon 90mcg once a week & 75mg...

Hello Everyone,Been quite a while since being on here. Hope you're all doing wel...

keviekev

•1 year ago

15 Replies

Pelabresib With Ruxolitinib Shows Improvements in Patients With JAK Inhibitor-Naïve Myelofibrosis

For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, treatment with pelabresib plus ruxolitinib was associated with durable...

For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, ...

PhysAssist

•1 year ago

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FDA Issues Complete Response Letter for Ruxolitinib Extended-Release Tablets

The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib...

The Food and Drug Administration (FDA) has issued a Complete Response Letter (CR...

PhysAssist

•1 year ago

Be the first to reply

So heartwarming and uplifting

I put a post on here the other day and did not expect lots of lovely response Too many to thank individually Thanks to all for showing there is defo a good...

I put a post on here the other day and did not expect lots of lovely response T...

Hidden

•1 year ago

1 Reply

Reactive Thrombocytosis

Does anyone know if cervical spondylosis causes reactive thrombocytosis?

levismama

•1 year ago

1 Reply

colonoscopy safe with lowish platelets?

I just received news that my fit test was high and had detected blood and I have been referred under the 2 week cancer pathway. My platelets are lowish around...

I just received news that my fit test was high and had detected blood and I have...

artydutch

•1 year ago

10 Replies

Seven months on

Hello friends, it's a while since I posted an update about my SCT. It's been about seven months since I received my donor cells and my blood/immune system is...

Hello friends, it's a while since I posted an update about my SCT. It's been abo...

Otterfield

•1 year ago

36 Replies

letter from consultation

just had my letter from my meeting last week … still awaiting diagnosis but please I welcome your thoughts on this….. I note the serial blood counts that you...

just had my letter from my meeting last week … still awaiting diagnosis but plea...

Carthe

•1 year ago

3 Replies

Managing ferritin levels with PV

I've been diagnosed with PV for just over 5 years now and my consultant has been managing my HCT levels with venesections and low dose aspirin during that...

I've been diagnosed with PV for just over 5 years now and my consultant has been...

Transporter

•1 year ago

21 Replies

What role should a Primary Care Provider have for MPN patients?

What role should a primary care provider provide for patients with MPN's? Obviously a PCP would address other health conditions that arise, but to what extent...

What role should a primary care provider provide for patients with MPN's? Obviou...

PupsBestFriends

•1 year ago

6 Replies

recent article

I have just read and article that stats the following - I just wanted to gaGe thoughts / feedback on this …as always thank you in advance Given the current...

I have just read and article that stats the following - I just wanted to gaGe th...

Carthe

•1 year ago

2 Replies

What is the Importance of Platelet Counts in MPNs

From our friends ay MyMPNTeam. The interview with Dr. Kuykendall is informative and easily understood. There is an article based on the interview too....

From our friends ay MyMPNTeam. The interview with Dr. Kuykendall is informative...

hunter5582

•1 year ago

14 Replies

Fatigue and Hydroxy

My doc tells me that fatigue is a common side effect hydroxy. I usually nap 1-2 hours during the day. Because I have REM sleep behavior disorder, its an issue...

My doc tells me that fatigue is a common side effect hydroxy. I usually nap 1-2 ...

Shadowperson

•1 year ago

14 Replies

PV v. MPN

I have PV. Are we saying it is the same as MPN?

Shadowperson

•1 year ago

5 Replies

MPN Specialized Care and Technology: Digital Health and Symptom Management

From our friends at Patient Empowerment network. Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by...

From our friends at Patient Empowerment network. Nearly 80% of patients livin...

hunter5582

•1 year ago

3 Replies

MPN Patient Bill of Rights

From our friends at the MPN Research Foundation. Beyond their laser focus on a patient's diagnosis and treatment, clinicians can be instrumental in...

From our friends at the MPN Research Foundation. Beyond their laser focus on a ...

hunter5582

•1 year ago

4 Replies

fatigue

Question: I (61F) have had ET for 5 years. Hydroxy for 2 years well tolerated and bloods within normal limits. can fatigue be attributed to ET, treatment or...

Question: I (61F) have had ET for 5 years. Hydroxy for 2 years well tolerated an...

PegSue

•1 year ago

22 Replies

jackafi

On for 5 weeks at 5 mg twice a day. Fatigue, nausea snd insomnia. Hct today was 36.5 down from 39.5 from just 2 weeks ago! Hemoglobin 13.5 down to 12.5....

On for 5 weeks at 5 mg twice a day. Fatigue, nausea snd insomnia. Hct today wa...

JeanieRN

•1 year ago

1 Reply

Sweating with PV

I have had Polycythemia for about 15 years. Phlebotomies control the hematocrit. Does anybody have hot flash type sweating? Comes on anytime and lasts for a...

I have had Polycythemia for about 15 years. Phlebotomies control the hematocrit...

Flimmeri

•1 year ago

12 Replies

Enlarged spleen/liver

I have MF on no medication at the moment. Have enlarged spleen and liver and now struggling to eat a full meal, also have a lot of heartburn/reflux. Does...

I have MF on no medication at the moment. Have enlarged spleen and liver and now...

flog

•1 year ago

12 Replies

Bloodshot eyes, interferon

Hi allHas anyone else experienced very bad blood shot eyes? Felt an ache in my right eye and the next morning the whole of the white of the eye was covered...

Hi allHas anyone else experienced very bad blood shot eyes? Felt an ache in my r...

Mpn71

•1 year ago

5 Replies

Change HCT behaviour- No clear explanation

Hi Jak 2 Positive PV diagnosed 6.5 years ago- Aspirin 0.75mg and until now Venesection every 3-4 mths Recently moved home and changed hospital care. During...

Hi Jak 2 Positive PV diagnosed 6.5 years ago- Aspirin 0.75mg and until now Vene...

Andyf24

•1 year ago

10 Replies

Besremi - NHS

Hi, hope everyone is well! can anyone confirm whether Besremi / ropeginterferon-Alfa-2b is approved for first line treatment of Polycythemia Vera on the...

Hi, hope everyone is well! can anyone confirm whether Besremi / ropeginterfe...

Steve_Essex

•1 year ago

15 Replies

Taking Jackafi and experiencing fatigue, nausea and insomnia

Hi, I started Jackafi 5 mg twice a day about 5 weeks ago. Has anyone else experienced these symptoms? Thank you in advance for any feedback? Jeanie

Hi, I started Jackafi 5 mg twice a day about 5 weeks ago. Has anyone else exper...

JeanieRN

•1 year ago

2 Replies

MPN Education Foundation 2023

just starting to to work my way through the recordings from the 2023 MPN Education Foundation 2023 conference. Here is the link to all of the recordings....

just starting to to work my way through the recordings from the 2023 MPN Educati...

hunter5582

•1 year ago

12 Replies

PV cough

Does anyone with PV suffer with a tickly cough? I’ve had one for about 4 weeks now and it’s beginning to worry me. I also have Budd-Chiari syndrome. Thanks...

Does anyone with PV suffer with a tickly cough? I’ve had one for about 4 weeks n...

Harrisonmatty93

•1 year ago

22 Replies

Update on my treatment plan and Turmeric Shot

Hi everyone last time I had my Peg injection , I was suffering from aching throbbing hips and legs . I've been taking a fresh turmeric shot that I make up...

Hi everyone last time I had my Peg injection , I was suffering from aching thro...

Blonde25

•1 year ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2023

one with people with secondary polycythemia

HU to Peg Transition Problems -

Serum Ferritin

Peg interferon

Pelabresib With Ruxolitinib Shows Improvements in Patients With JAK Inhibitor-Naïve Myelofibrosis

FDA Issues Complete Response Letter for Ruxolitinib Extended-Release Tablets

So heartwarming and uplifting

Reactive Thrombocytosis

colonoscopy safe with lowish platelets?

Seven months on

letter from consultation

Managing ferritin levels with PV

What role should a Primary Care Provider have for MPN patients?

recent article

What is the Importance of Platelet Counts in MPNs

Fatigue and Hydroxy

PV v. MPN

MPN Specialized Care and Technology: Digital Health and Symptom Management

MPN Patient Bill of Rights

fatigue

jackafi

Sweating with PV

Enlarged spleen/liver

Bloodshot eyes, interferon

Change HCT behaviour- No clear explanation

Besremi - NHS

Taking Jackafi and experiencing fatigue, nausea and insomnia

MPN Education Foundation 2023

PV cough

Update on my treatment plan and Turmeric Shot

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