Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for October 2022

Update – PV, lung carcinoid tumor and bone marrow abnormalities

Hello everyone, here’s an update on my post earlier this year asking about the likelihood of a link between the onset of PV and a lung carcinoid (tumor)...

Hello everyone, here’s an update on my post earlier this year asking about the l...

Imkerin

•2 years ago

2 Replies

2nd dose of interferon

l have awful flu like symptoms, headache and migraine a week following my first Pegasys injection also ceased Hydroxycarbamide on the same day. 2nd injection...

l have awful flu like symptoms, headache and migraine a week following my first...

Hidden

•2 years ago

28 Replies

Hydroxy - reluctant to use

Hi All. I was diagnosed with ET Jak2 positive 10 years ago. I have plc ranging generally anywhere between 590 to 630, with occasional climbs up to 750....

Hi All. I was diagnosed with ET Jak2 positive 10 years ago. I have plc ranging...

Deece

•2 years ago

27 Replies

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High platelet count

I have a high platelet count as well and I’m 67. It’s been high for about 25 years, has been as high as 1760, I refuse to take the pharmaceutical drugs. Do...

I have a high platelet count as well and I’m 67. It’s been high for about 25 ye...

Grouchygrady

•2 years ago

8 Replies

turmeric in inflammation in PMF

Hello, can turmeric help with muscle, joint & bone pain in PMF? If so in what form & dosage? …. and any known contraindications? Many thanks, Susie

Hello, can turmeric help with muscle, joint & bone pain in PMF? If so in what f...

Itch

•2 years ago

17 Replies

Sunshine

Benefits or drawbacks of having Photo therapy treatment for itch related to Polycythemia Vera

Benefits or drawbacks of having Photo therapy treatment for itch related to Poly...

Normski1

•2 years ago

5 Replies

Iron and PCV

Hi, My iron level is 11. My last HCT is 43.9 on 100 mcgs of Besremi every 2 weeks. Should I avoid foods containing iron? Thank you! Jeanie

Hi, My iron level is 11. My last HCT is 43.9 on 100 mcgs of Besremi every 2 w...

JeanieRN

•2 years ago

5 Replies

Update of Mithradite Trial

I am now one year into the Mithradite trial and thought a good time for update. The Mithradite trial is a randomised trial of Ruxolitnib against best...

I am now one year into the Mithradite trial and thought a good time for update....

JP1952

•2 years ago

25 Replies

Having a BMB and progession from ET

Morning everyone just a quick question. When I went to see my hematologist .They said that my ET had progression. So wants me to go for a BMB .This will be my...

Morning everyone just a quick question. When I went to see my hematologist .The...

Daisey123

•2 years ago

18 Replies

high platelets

high lovely people so I had my bloods done on Tuesday my doctor rang me Thursday to say my platelets are 1250 and now I have to go on the injection am a female...

high lovely people so I had my bloods done on Tuesday my doctor rang me Thursday...

Staroftheday

•2 years ago

6 Replies

Help please again sorry

Iv read on a letter that was sent to me instead of my go that I have triple negative essential thromboycemia can’t spell it. Anyone know what the difference is...

Iv read on a letter that was sent to me instead of my go that I have triple nega...

Cat1001954

•2 years ago

22 Replies

What to look for in a medical provider who helps with inflammation?

Because of my MPN, I'd like to start working with a health practitioner who can help me target and improve inflammation, incorporate possible supplements like...

Because of my MPN, I'd like to start working with a health practitioner who can ...

Lucy2022

•2 years ago

7 Replies

HCT 45.1

On Besremi 100mcgs every 2 weeks. My numbers aren’t terrible but are going up. I was so happy but now I don’t know. Thoughts? Should I request a...

On Besremi 100mcgs every 2 weeks. My numbers aren’t terrible but are going up...

Barbiebreath

•2 years ago

20 Replies

HU wait time to take effect

Hi good folks! In your experiences, how long does one wait for the chemo (hydroxyurea) to significantly lower the platelets? 74 y/o male with ET/jac2. I...

Hi good folks! In your experiences, how long does one wait for the chemo (hydro...

Jazzman7

•2 years ago

9 Replies

Travel with Interferon

I have read posts regarding travel and transporting my drug whilst flying. I'm travelling from Heathrow to Sydney in December with a stopover in Malaysia. So...

I have read posts regarding travel and transporting my drug whilst flying. I'm ...

Abrams

•2 years ago

20 Replies

ET Diagnosis

I'm looking fora MPN physician in the Chicago IL area. Do you have any recommendations?

I'm looking fora MPN physician in the Chicago IL area. Do you have any recomm...

drucella01

•2 years ago

8 Replies

Besremi

Hello all, I am on my 4th dose of besremi I have not had any terrible side affects. However my Lipase has been rising yesterday at 98ul I am concerned. The...

Hello all, I am on my 4th dose of besremi I have not had any terrible side affe...

josup26

•2 years ago

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Besremi

Hello all, I have started Besremi and on my 4th does which was raised to 150. I am feeling better and no side affects. However my Lipase has been climbing...

Hello all, I have started Besremi and on my 4th does which was raised to 150. I ...

josup26

•2 years ago

4 Replies

life. To wear or not to wear

I would love to hear from people of a mature age like me who have sex but do not wear condoms and how long they have been not using them thank you

I would love to hear from people of a mature age like me who have sex but do not...

Cat1001954

•2 years ago

12 Replies

Interferon and thyroid

Is anyone on interferon who also has a thyroid condition ? I have been told by my consultant that they would not be happy with me trying interferon as I have...

Is anyone on interferon who also has a thyroid condition ? I have been told by ...

jodary

•2 years ago

30 Replies

Hydroxyurea Dosage

After many many years of no health concerns, my wife at 68yrs old last December, 2021 had a routine cbc and the platelets were at 2200 on the usual 150-350...

After many many years of no health concerns, my wife at 68yrs old last December,...

Kame279

•2 years ago

3 Replies

First venesection - symptom query

Hi All I had my first venesection for PV on 11th Oct. My HCT went down to 44.3 which was great. That night I got a headache and visual flashes(symptom I had...

Hi All I had my first venesection for PV on 11th Oct. My HCT went down to 44....

LittleLuna

•2 years ago

17 Replies

lovelife

is it safe to have sex without hubby using condon anyone know? Thank you

Cat1001954

•2 years ago

7 Replies

newbie

hi I’m newly diagnosed in august have ET

Cat1001954

•2 years ago

27 Replies

The Gut Microbiota in Patients with Polycythemia Vera is Distinct from that of Healthy Controls and Varies by Treatment

»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown to be disease-modifying in terms of normalization of elevated blood cell counts...

»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown t...

Manouche

•2 years ago

11 Replies

Statins and ET

Hi lovely people. My GP has recommended I start taking statins. I emailed the specialist nurse and she has replied saying the GP will have taken everything...

Hi lovely people. My GP has recommended I start taking statins. I emailed the s...

Conneryfan

•2 years ago

18 Replies

82 y/o with PV on Hydrea, having problem with getting good flow of blood on phlebotomy.

Could only get 1/2 pint of blood removed on phlebotomy. Could be small vessels? Does anyone have this similar problem. Hematocrit was 43.3 but my doctor...

Could only get 1/2 pint of blood removed on phlebotomy. Could be small vessels?...

singsingsing02

•2 years ago

8 Replies

ET with JAK2

Hello Everyone, I am a male 78 years old and have ET with JAK2 (Probably for 4 years, diagnosed 2 years.) Also had a heart attack and blood clot prior to...

Hello Everyone, I am a male 78 years old and have ET with JAK2 (Probably for ...

Capetranquility

•2 years ago

9 Replies

Anagrelide

I know we all react very differently to meds can I ask those who take Anagrelide for et how they have found it. I can't take interferon currently on hu.

I know we all react very differently to meds can I ask those who take Anagrelid...

ciye

•2 years ago

5 Replies

ET accelerated progression

hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free....

hi. I have had ET since 2004, treated with varying doses of HU and in later year...

Smdg

•2 years ago

24 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

Update – PV, lung carcinoid tumor and bone marrow abnormalities

2nd dose of interferon

Hydroxy - reluctant to use

High platelet count

turmeric in inflammation in PMF

Sunshine

Iron and PCV

Update of Mithradite Trial

Having a BMB and progession from ET

high platelets

Help please again sorry

What to look for in a medical provider who helps with inflammation?

HCT 45.1

HU wait time to take effect

Travel with Interferon

ET Diagnosis

Besremi

Besremi

life. To wear or not to wear

Interferon and thyroid

Hydroxyurea Dosage

First venesection - symptom query

lovelife

newbie

The Gut Microbiota in Patients with Polycythemia Vera is Distinct from that of Healthy Controls and Varies by Treatment

Statins and ET

82 y/o with PV on Hydrea, having problem with getting good flow of blood on phlebotomy.

ET with JAK2

Anagrelide

ET accelerated progression

Search posts

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What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

Update – PV, lung carcinoid tumor and bone marrow abnormalities

﻿2nd dose of interferon

﻿Hydroxy - reluctant to use

High platelet count

turmeric in inflammation in PMF

Sunshine

Iron and PCV

﻿Update of Mithradite Trial

﻿Having a BMB and progession from ET

high platelets

Help please again sorry

What to look for in a medical provider who helps with inflammation?

HCT 45.1

HU wait time to take effect

Travel with Interferon

﻿ET Diagnosis

Besremi

Besremi

life. To wear or not to wear

﻿Interferon and thyroid

Hydroxyurea Dosage

First venesection - symptom query

lovelife

newbie

The Gut Microbiota in Patients with Polycythemia Vera is Distinct from that of Healthy Controls and Varies by Treatment

﻿Statins and ET

82 y/o with PV on Hydrea, having problem with getting good flow of blood on phlebotomy.

ET with JAK2

﻿Anagrelide

ET accelerated progression

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

2nd dose of interferon

Hydroxy - reluctant to use

Update of Mithradite Trial

Having a BMB and progession from ET

ET Diagnosis

Interferon and thyroid

Statins and ET

Anagrelide