Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for June 2022

Covid vaccine No 5

Hi all A really quick question; should the 5th covid jab be a booster or an additional primary dose? Thanks Pete

Hi all A really quick question; should the 5th covid jab be a booster or an addi...

PT99

•2 years ago

4 Replies

Pegasys injection 3

My Dr wrote my Peg to be given every 2 weeks. I have had 2, so far, 90mcg, then 70 mcg. Yesterday, my HCT was up from 39.9 to 43.7 in a span of 10 days. I...

My Dr wrote my Peg to be given every 2 weeks. I have had 2, so far, 90mcg, then...

Wewo01

•2 years ago

17 Replies

Covid

Hi I have caught Covid (in Spain)2days ago I was allowed to skip my pegylated interferon dose for this holiday ( choir tour) as it’s a tiring week. On return...

Hi I have caught Covid (in Spain)2days ago I was allowed to skip my pegylated in...

Bobadog

•2 years ago

10 Replies

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Low iron levels.

Hi my ferritin level is 11. I looked it up but I still don’t fully understand why iron levels remain low with PCV? Any input is appreciated. I am also...

Hi my ferritin level is 11. I looked it up but I still don’t fully understand w...

JeanieRN

•2 years ago

11 Replies

PV Haematologist DiscussionUPDATE

***Firstly I would like to thank everyone’s input all much appreciated. I can confirm that I have an appointment to get bloods done tomorrow at 11:30 and have...

***Firstly I would like to thank everyone’s input all much appreciated. I can co...

Hocus58

•2 years ago

37 Replies

Traveling with Besremi

Long trips with Besremi. What do you use to have in temperatura this medication? Thanks

Long trips with Besremi. What do you use to have in temperatura this medication?...

SoledadBarcelona

•2 years ago

13 Replies

First Hematologist visit

27 M Symptoms Migraines w/ aura Itchy after shower (dont really get it anymore, but have in the past) Fatigue No history of Bleeding or Blood clots ....

27 M Symptoms Migraines w/ aura Itchy after shower (dont really get it anymor...

Keanu808

•2 years ago

15 Replies

Just received a letter

I have today received a copy of a letter that was sent to my gp after my clinic appointment for the mutations. It was sent 3 weeks after. And added on it......

I have today received a copy of a letter that was sent to my gp after my clinic ...

Notdiagnosed

•2 years ago

4 Replies

Night cramps

I have been having horrendous leg cramps every night - they move around from ankle to leg front or back of leg. My feet go into spasm. I have Myelofibrosis...

I have been having horrendous leg cramps every night - they move around from ank...

skipperL

•2 years ago

22 Replies

For Maz

My alert and chat options have suddenly become inaccessible, the little circle keeps spinning in the middle of the page but neither will open. Any ideas how I...

My alert and chat options have suddenly become inaccessible, the little circle k...

Trueblue8

•2 years ago

2 Replies

Redsab7

Hi Susie, For some reason I can't access my chat or alerts at the moment. If it doesn't clear itself I'll have to probably delete and re-join my account. I...

Hi Susie, For some reason I can't access my chat or alerts at the moment. If it ...

Trueblue8

•2 years ago

2 Replies

Besremi - CBC after the 9th dose at 175 mcg (25mcg lower than previous); no CBC test after the 8th dose

Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 9th dose (results of 6/23/2022; 1st dose...

Just want to share my Besremi experience for anything to be learned from it. Abo...

Pat032018

•2 years ago

14 Replies

Covid vaccination

How many jabs have you all had? X

harleydavidson

•2 years ago

58 Replies

Shingles! Cause of my hip and leg pain?

Having had severe left hip and leg pain for nearly two weeks, I came out with a rash on the same leg and foot. As I also had a slightly elevated temperature, I...

Having had severe left hip and leg pain for nearly two weeks, I came out with a ...

Michali45

•2 years ago

12 Replies

Pfizer 3rd dose durable protection

Browsing the Euro Hematology conference 2022 site there is an interesting report on the Pfizer vax. The 1st booster shot (3rd shot) was durable to at least 6...

Browsing the Euro Hematology conference 2022 site there is an interesting report...

EPguy

•2 years ago

2 Replies

Diagnosis update - PV - in limbo

Hi So had my appointment with yet another different haematologist today following my BMB. Still no further forward. Apparently bone marrow aspirate was non...

Hi So had my appointment with yet another different haematologist today followin...

LittleLuna

•2 years ago

25 Replies

Update on my problem with veins and a big thank you.

Hi, i just wanted to thank most fully and sincerely all those who so generously responded to my question of a few days ago. I had mentioned how hard it was for...

Hi, i just wanted to thank most fully and sincerely all those who so generously ...

Aquinas

•2 years ago

2 Replies

Platelets and contraceptive pills?

Hi good day, I read that contraceptive pills can cause platelet aggregation, does it applies also if it’s an emergency contraception? Am I risking myself if I...

Hi good day, I read that contraceptive pills can cause platelet aggregation, doe...

livelovelaugh1992

•2 years ago

1 Reply

Blood tests yesterday tested positive covid when I got home

Well I had my final blood tests yesterday and when I got home I did a covid test and tested positive I have my appointment with the consultant next week....

Well I had my final blood tests yesterday and when I got home I did a covid test...

Notdiagnosed

•2 years ago

11 Replies

Peginterferon with Anagrelide?

Hi, does anyone out there have experience of taking peginterferon with Anagrelide for ET? Until about 6 mths ago I was taking a mixture of Hydrea and...

Hi, does anyone out there have experience of taking peginterferon with Anagrelid...

R_Watson

•2 years ago

2 Replies

TET2 Mutation

I have ET JAK2 pos and take hydroxycarbamide and low dose aspirin. After a routine blood test I've been informed that I have another mutation known as TET2....

I have ET JAK2 pos and take hydroxycarbamide and low dose aspirin. After a routi...

Trueblue8

•2 years ago

16 Replies

Fatigue

Has anyone had to give up work due to fatigue and other side effects

Daisyduke40

•2 years ago

14 Replies

Can anyone recommend a cooler bag for travelling with Interferon in the tropics?

We are off on a family trip to Costa Rica and are going to be spending a fair amount of time on buses. Can anyone recommend a lightweight method to keep my...

We are off on a family trip to Costa Rica and are going to be spending a fair am...

Huginn

•2 years ago

10 Replies

Polycythemia vera and prostate reduction procedures

I'd like to hear from men diagnosed with polycythemia vera and BPH who have had or who are considering a prostate reduction procedure. Some of these surgical...

I'd like to hear from men diagnosed with polycythemia vera and BPH who have had ...

sbs_patient

•2 years ago

7 Replies

Changing the time of administering pegasys

I'm due to give myself my 2nd dose today. My CNS advised that it's got to be taken weekly and within an hour of the first dose. My first dose was 15:15. I note...

I'm due to give myself my 2nd dose today. My CNS advised that it's got to be tak...

Cakeface

•2 years ago

20 Replies

Interferon injections

Hi folks, Wanted to know,am about to go on interferon injections as my iron count is 3.4 & ferritin count is 16. I feel fine but wondered how the injections...

Hi folks, Wanted to know,am about to go on interferon injections as my iron cou...

keviekev

•2 years ago

9 Replies

Those who have Essential Thrombocythemia

Hi, I am wondering those who have Essential Thromboycthemia (ET) if you have chills as a symptom? I was diagnosed with ET in November 2021 and at that time did...

Hi, I am wondering those who have Essential Thromboycthemia (ET) if you have chi...

lindabomba

•2 years ago

20 Replies

Storage bag/pouche to keep Pegasys at fridge temp.while on the go.

I would appreciate a recommendation for a ‘cool bag’ in which to store Pegasys jabs that I simply can’t deter from accompanying me on holiday. The rural Inn...

I would appreciate a recommendation for a ‘cool bag’ in which to store Pegasys ...

gilded

•2 years ago

11 Replies

MPN Voice Vlogcasts – In Conversation With…Michele

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal conversations with members of the MPN community with Nona co-chair of MPN Voice and a...

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal convers...

Mazcd

Partner•2 years ago

Be the first to reply

Share my experience after few months with MPN

Hey everyone, after I discovered in the past few months Jak 2 positive and then The trouble of 2 BMB in the same morning and then some symptoms was getting...

Hey everyone, after I discovered in the past few months Jak 2 positive and then...

Inverter

•2 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2022

Covid vaccine No 5

Pegasys injection 3

Covid

Low iron levels.

PV Haematologist DiscussionUPDATE

Traveling with Besremi

First Hematologist visit

Just received a letter

Night cramps

For Maz

Redsab7

Besremi - CBC after the 9th dose at 175 mcg (25mcg lower than previous); no CBC test after the 8th dose

Covid vaccination

Shingles! Cause of my hip and leg pain?

Pfizer 3rd dose durable protection

Diagnosis update - PV - in limbo

Update on my problem with veins and a big thank you.

Platelets and contraceptive pills?

Blood tests yesterday tested positive covid when I got home

Peginterferon with Anagrelide?

TET2 Mutation

Fatigue

Can anyone recommend a cooler bag for travelling with Interferon in the tropics?

Polycythemia vera and prostate reduction procedures

Changing the time of administering pegasys

Interferon injections

Those who have Essential Thrombocythemia

Storage bag/pouche to keep Pegasys at fridge temp.while on the go.

MPN Voice Vlogcasts – In Conversation With…Michele

Share my experience after few months with MPN

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2022

Covid vaccine No 5

Pegasys injection 3

Covid

Low iron levels.

PV Haematologist Discussion**UPDATE**

Traveling with Besremi

First Hematologist visit

Just received a letter

Night cramps

For Maz

Redsab7

Besremi - CBC after the 9th dose at 175 mcg (25mcg lower than previous); no CBC test after the 8th dose

Covid vaccination

Shingles! Cause of my hip and leg pain?

Pfizer 3rd dose durable protection

Diagnosis update - PV - in limbo

Update on my problem with veins and a big thank you.

Platelets and contraceptive pills?

Blood tests yesterday tested positive covid when I got home

Peginterferon with Anagrelide?

TET2 Mutation

Fatigue

Can anyone recommend a cooler bag for travelling with Interferon in the tropics?

Polycythemia vera and prostate reduction procedures

Changing the time of administering pegasys

Interferon injections

Those who have Essential Thrombocythemia

Storage bag/pouche to keep Pegasys at fridge temp.while on the go.

MPN Voice Vlogcasts – In Conversation With…Michele

Share my experience after few months with MPN

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

PV Haematologist DiscussionUPDATE