Posts - MPN Voice | HealthUnlocked

MPN Voice

10,403 members • 14,350 posts

All posts for November 2021

Besremi versus Pegasys

This question was raised by Flynn2107 months ago. I looked into it and replied there but it seems worth a new post with the recent FDA approval. PEG and...

This question was raised by Flynn2107 months ago. I looked into it and replied ...

EPguy

•2 years ago

3 Replies

PEGINVERA study for Besremi, part basis for FDA approval

I found about this study only recently from its reference in the FDA approval for Besremi since it's noted prominently there. Many of you have likely seen it...

I found about this study only recently from its reference in the FDA approval fo...

EPguy

•2 years ago

1 Reply

PV progression?

Hi, I’m 39 years old and was originally diagnosed about 4 yrs ago with ET.. platelets around 550.. steadily increasing to 850-900s and recently (last year)...

Hi, I’m 39 years old and was originally diagnosed about 4 yrs ago with ET.. plat...

Steve_Essex

•2 years ago

8 Replies

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Side effects of HU

My platelet count is at 800. Started the HU and got very ill. Nausea… just awful in general. Does this go away?

My platelet count is at 800. Started the HU and got very ill. Nausea… just awfu...

kula96

•2 years ago

9 Replies

Myelofibrosis and nausea

Hi everyone. I was diagnosed with Prefibrotic Myelofibrosis 3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the...

Hi everyone. I was diagnosed with Prefibrotic Myelofibrosis 3 years ago and curr...

kiwitraveller

•2 years ago

10 Replies

New Plots for Besremi & "Beneficial"

EDIT NOV 28: See larger plot images in reply section below, these are easier to read. I posted a while ago a plot of allele data from the Conti PV study....

EDIT NOV 28: See larger plot images in reply section below, these are easier to ...

EPguy

•2 years ago

11 Replies

Covid 3rd Jab

I went for my 3rd jab today. I asked if it was Madurna or Pfizer. They said Madurna. I said I can't have Madurna as its only half does, the doctor asked was it...

I went for my 3rd jab today. I asked if it was Madurna or Pfizer. They said Madu...

mark382

•2 years ago

8 Replies

Thoughts on cholesterol/statins

Just want to pick your brains, anyone who’s interested. My total cholesterol has increased in the last two years. These are the last three readings...

Just want to pick your brains, anyone who’s interested. My total cholesterol has...

mhos61

•2 years ago

24 Replies

Cytoreductive therapy

Hello everyone,it's been ages since I've been here. Just wanted to ask a question. Spoke to my consultant and wants to discuss starting me on cytoreductive...

Hello everyone,it's been ages since I've been here. Just wanted to ask a questio...

keviekevstar

•2 years ago

3 Replies

Medication Change

Hi all hope every one is having a good day My consultant is reviewing changing me to Anagralide from HU. At present I am taken 2500 HU daily and to be honest...

Hi all hope every one is having a good day My consultant is reviewing changing ...

JeniMac

•2 years ago

26 Replies

Haematology tests and outcome.

Hi everyone. I had a consultation with haematologist yesterday. I have ET. They had asked me to do extra blood tests for immunology and earlier this week I...

Hi everyone. I had a consultation with haematologist yesterday. I have ET. They...

hall2

•2 years ago

2 Replies

Hi guys not been on in a while !

Hi everyone I've not been on in a while I've been a little head mashed and since having a bad allergic reaction to the fabulous jab I'm still in solitary...

Hi everyone I've not been on in a while I've been a little head mashed and since...

Boobles

•2 years ago

3 Replies

Researchers Identify Novel Biomarker, Therapeutic Target for Polycythemia Vera

« This study identified MAPK14 as a promising disease marker,” they concluded and provided insight into therapeutic targets »...

« This study identified MAPK14 as a promising disease marker,” they concluded an...

Manouche

•2 years ago

2 Replies

Outcomes with Interferon in Polycythemia Vera: A Systematic Review and Meta-Analysis

Conclusion Interferon shows promising results when used for the treatment of polycythemia vera with a durable hematologic and molecular response and has an...

Conclusion Interferon shows promising results when used for the treatment of pol...

Manouche

•2 years ago

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B12 result

Hi, I arranged (privately)an active B 12 test this week,which apparently shows the level of B12 which can actually be used in the body? My result is 248...

Hi, I arranged (privately)an active B 12 test this week,which apparently shows t...

Bobadog

•2 years ago

12 Replies

Update - appointment with cons. haematologist (Dr Mark Drummond)

Hi everyone just thought I’d post an update as a few of you guys asked me to keep you posted on how it went with my private consultation. Well, saw Dr Drummond...

Hi everyone just thought I’d post an update as a few of you guys asked me to kee...

Peetzil

•2 years ago

8 Replies

Is change good?

Me = 78, Jak2 and ET + Edoxaban. I had a rare FTF meet with my Haematologist and raised the point that the side effects of Hydroxycarbamide are increasing -...

Me = 78, Jak2 and ET + Edoxaban. I had a rare FTF meet with my Haematologist an...

Hidden

•2 years ago

12 Replies

Platelets increase on Peg

Hi guys! I've noticed several posts from people getting Peg that their platelets are increasing. In our case (polycythemia vera) one of the reasons to get Peg...

Hi guys! I've noticed several posts from people getting Peg that their platelets...

Dovakin

•2 years ago

13 Replies

Peg Update

Had appointment with my MPN specialist last night. Overall good - staying course with Peg at current dose for now. Was a little disappointed that my platelets...

Had appointment with my MPN specialist last night. Overall good - staying course...

Solyesh

•2 years ago

16 Replies

Pfizer jab

Hi I have ET diagnosed 20 years ago . Over the years I have had several really bad allergic episodes with an over hives rash, swollen hands and feet . I was...

Hi I have ET diagnosed 20 years ago . Over the years I have had several really ...

millycat

•2 years ago

14 Replies

Besremi Progress in US

Nice update on its availability and well arranged info about it. This distributor is authorized to sell it. Seems in theory our Drs could start prescribing...

Nice update on its availability and well arranged info about it. This distribut...

EPguy

•2 years ago

26 Replies

Thankyou

Thankyou for your replies, I was quite concerned, but didn't realise it wasn't a live vaccine.

Thankyou for your replies, I was quite concerned, but didn't realise it wasn't a...

netty64

•2 years ago

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Antibody test

ET Jak2 +. On peg 45mcg/weekly. I had the results back for my antibody test today and I’m pleased to say that I am positive for covid antibodies 😁 I...

ET Jak2 +. On peg 45mcg/weekly. I had the results back for my antibody test ...

Jynx93

•2 years ago

11 Replies

Best time of day for meds??

Is there a best time of the day to take aspirin, HU or an interferon shot?? Just wondering if anyone has found a best time of the day for these, as to be most...

Is there a best time of the day to take aspirin, HU or an interferon shot?? Just...

MAP44

•2 years ago

12 Replies

Cause of secondary polycythemia

I am (52) female with EPO of 19.5 and RBC of 5.04. I am going to a hematologist at the end of November. I am not a smoker, no sleep apnea, nothing in the...

I am (52) female with EPO of 19.5 and RBC of 5.04. I am going to a hematologist ...

iCrochet

•2 years ago

2 Replies

sorry but covid vaccine again

today I have had clinic and I asked about the 3rd primary dose , and I was told by the specialist pharmacist , that my consultant has decided that I didn't...

today I have had clinic and I asked about the 3rd primary dose , and I was told ...

kevmince

•2 years ago

16 Replies

2nd Shingrix jab

Hi, I’m a 70 year old lady with ET and taking hydroxycarbamide. I had my second Shingrix jab 2 days ago and started having side effects within 6 hours. Had no...

Hi, I’m a 70 year old lady with ET and taking hydroxycarbamide. I had my second ...

Ozziepig

•2 years ago

13 Replies

Biotin as a boost for hair thinninh

I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?

I have been told Biotin is good for thinning hair.does anyone know of any reaso...

caroline_284

•2 years ago

35 Replies

Had booster vaccine done 7weeks ago came down with covid on Tuesday 16 has anyone got the covid after having the booster

Cornsviris

Hidden

•2 years ago

46 Replies

Monthly blog dedicated to young people living with MPNs. Alice’s second post on our new young patient blog is here!

In Conversation with… Gabor This month Alice chats with Gabor, who is 30 years old and has PV. Over the course of 20 questions, Gabor shares his...

In Conversation with… Gabor This month Alice chats with Gabor, who is 30 years o...

Mazcd

Partner•2 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2021

Besremi versus Pegasys

PEGINVERA study for Besremi, part basis for FDA approval

PV progression?

Side effects of HU

Myelofibrosis and nausea

New Plots for Besremi & "Beneficial"

Covid 3rd Jab

Thoughts on cholesterol/statins

Cytoreductive therapy

Medication Change

Haematology tests and outcome.

Hi guys not been on in a while !

Researchers Identify Novel Biomarker, Therapeutic Target for Polycythemia Vera

Outcomes with Interferon in Polycythemia Vera: A Systematic Review and Meta-Analysis

B12 result

Update - appointment with cons. haematologist (Dr Mark Drummond)

Is change good?

Platelets increase on Peg

Peg Update

Pfizer jab

Besremi Progress in US

Thankyou

Antibody test

Best time of day for meds??

Cause of secondary polycythemia

sorry but covid vaccine again

2nd Shingrix jab

Biotin as a boost for hair thinninh

Had booster vaccine done 7weeks ago came down with covid on Tuesday 16 has anyone got the covid after having the booster

Monthly blog dedicated to young people living with MPNs. Alice’s second post on our new young patient blog is here!

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