Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for January 2021

Rechecking JAK2 V617F Allele Burden

Hi all, I have an appt with my heme on Feb 4 where he will test my allele burden - 1 yr since my PV diagnosis. Been on a daily double dose of a baby aspirin,...

Hi all, I have an appt with my heme on Feb 4 where he will test my allele burden...

JT_Marlin

•4 years ago

7 Replies

Itching-duloxetine

HI ... has anyone used duloxetine for severe PV itching??? If so, what was your experience?? Thanks everyone!!

HI ... has anyone used duloxetine for severe PV itching??? If so, what was your...

Hidden

•4 years ago

14 Replies

HOW WHITE BLOOD CELLS WORK...

Post by MPN-MATE Admin » Wed Jan 20, 2021 12:28 pm Morning all... :D Just a short video clip on How White Blood Cells Work... Thought some of you might find...

Post by MPN-MATE Admin » Wed Jan 20, 2021 12:28 pm Morning all... :D Just a s...

socrates_8

•4 years ago

19 Replies

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Ropeginterferon alfa-2b versus phlebotomy in low-risk patients with polycythaemia vera (Low-PV study)

There is no evidence that phlebotomy alone is sufficient to steadily maintain haematocrit on target level in low-risk patients with polycythaemia vera. This...

There is no evidence that phlebotomy alone is sufficient to steadily maintain ha...

Manouche

•4 years ago

7 Replies

Is it time for interferon in low-risk patients with polycythaemia vera?

« The use of interferon for the treatment of myeloproliferative neoplasms has a long tradition. Pioneering studies were done by Silver and Gisslinger in the...

« The use of interferon for the treatment of myeloproliferative neoplasms has a ...

Manouche

•4 years ago

1 Reply

What is protocol for covid vaccine when on hydroxy urea

On hydroxy urea. What is protocol for covid vaccine

Petsch

•4 years ago

17 Replies

Update on vaccine

A few people have asked me about the vaccine, so here’s my story. I ended not getting it. My partner and I had an appointment at a park. We had a 9:15...

A few people have asked me about the vaccine, so here’s my story. I ended not ge...

Cja1956

•4 years ago

19 Replies

Any advice?

Hi all. My husband has PV, he had a heart attack back in June and was diagnosed straight after with jak2+. His level was .54 and he had approx 6 venesections....

Hi all. My husband has PV, he had a heart attack back in June and was diagnosed ...

Mylo6

•4 years ago

8 Replies

Whole-genome sequencing shows driver mutations can be acquired very early in life

Another interesting piece a research posted on MPN Hub. It is a small study, but quite intriguing....

Another interesting piece a research posted on MPN Hub. It is a small study, bu...

hunter5582

•4 years ago

8 Replies

Integrative Medicine for MPNs

Just received a note on this study from MPN Hub. Very interesting look at potential benefits from the use of Integrative medicine in managing the symptom...

Just received a note on this study from MPN Hub. Very interesting look at poten...

hunter5582

•4 years ago

18 Replies

Relaxation massage in ET

Hi all, I’m curious if anyone with mpn has been advised against massage therapy due to increased risk of clot/bleed? (I haven’t had any clots). I did a massage...

Hi all, I’m curious if anyone with mpn has been advised against massage therapy ...

Lions3

•4 years ago

8 Replies

Pv with covid

Hi everyone I have pv jak2 positive im 49 years old and taking asprin and hydrocarbmite I have had covid for a week now did not know I had it before I had the...

Hi everyone I have pv jak2 positive im 49 years old and taking asprin and hydroc...

Polyruba

•4 years ago

15 Replies

Is it safe to take any covid vaccine if you're on hydroxy

Is it safe to take any covid vaccine with hydroxy? The instructions I've been given are not to take any live vaccines.

Is it safe to take any covid vaccine with hydroxy? The instructions I've been gi...

happy48

•4 years ago

8 Replies

Clinically Extremely Vulnerable

As I've written before I have never received a shielding letter and in Wales there is no mechanism to register. Someone on a Facebook group posted the link to...

As I've written before I have never received a shielding letter and in Wales the...

mark382

•4 years ago

30 Replies

Fertility and essential thrombocythemia

Hey I’m 32 year of age Iv currently have essential thrombocythemia , diagnosed over 10 years ago with blood readings of 1,800 Currently takin Pegasy Been...

Hey I’m 32 year of age Iv currently have essential thrombocythemia , diagnosed o...

BeckyG88

•4 years ago

4 Replies

Sodabread

Hi all - Has anyone been invited to the Covid 19 discussion session on line on Saturday 16th January -11 - 12.30 hrs. Only received it this morning which I...

Hi all - Has anyone been invited to the Covid 19 discussion session on line on S...

Sodabread

•4 years ago

1 Reply

Information on Vaccination

Has anyone with ET had the Pfizer vaccine and is there any news if it’s a problem?

Has anyone with ET had the Pfizer vaccine and is there any news if it’s a proble...

Caringdad13

•4 years ago

9 Replies

New mutation

Morning all I haven’t posted for a while as have been struggling along nicely on peg ...... My platelets have remained steady although my HCT has been creeping...

Morning all I haven’t posted for a while as have been struggling along nicely on...

Graham7694

•4 years ago

7 Replies

MF and platelet transfusions

Hi there, I’ve been reading posts on this forum for a little while but am posting for the first time. My father, who is in his late 70s, was diagnosed with MF...

Hi there, I’ve been reading posts on this forum for a little while but am postin...

dnsn

•4 years ago

5 Replies

Double dose of hydroxy

Hi today to bring my platelets down my dose of hydroxy was increased from one daily to 2 every other day. Shortly after taking this new dose l had a strange...

Hi today to bring my platelets down my dose of hydroxy was increased from one ...

Hidden

•4 years ago

8 Replies

Red Cheeks solution?

Can anything be done about hot, red flaming cheeks? I look like I've been scorched. Usually the red cheeks come and go, but they've been this way for two days...

Can anything be done about hot, red flaming cheeks? I look like I've been scorc...

Lena70

•4 years ago

16 Replies

Doctor thinks I have PV

I wrote a post a few months ago about my gp having cause for concern with my RBC. I have nephrotic syndrome (kidney disease) have had it since I was 8 I’m now...

I wrote a post a few months ago about my gp having cause for concern with my RBC...

Phoebe776

•4 years ago

7 Replies

Concerned about teeth health

Hi by now l would have had me usual dental checks. Of course this has not been possible due to the current situation. I'm wondering wether others have...

Hi by now l would have had me usual dental checks. Of course this has not been ...

Hidden

•4 years ago

7 Replies

MF

I’m 67 and about 2 years ago was diagnosed with Myelofibrosis with no real symptoms it was picked up with a routine blood test. Still in a bit of shock even...

I’m 67 and about 2 years ago was diagnosed with Myelofibrosis with no real sympt...

Grizly

•4 years ago

12 Replies

MPN Specialists in California (ET - JAK2)

Looking for recommendations on any MPN Specialists in California (central if possible). I’ve already been to one specialist listed on the MPN Resource...

Looking for recommendations on any MPN Specialists in California (central if pos...

Kseely

•4 years ago

2 Replies

Platets results

Hi had my chat with haematology says platelets have got bit higher 650 from 598 but I have been 679 before up and down every 3 months everything else seem...

Hi had my chat with haematology says platelets have got bit higher 650 from 598 ...

Jody00

•4 years ago

7 Replies

Restless Legs / Body

Hi all. I am posting this for my mother aged 83 who was diagnosed with Polycythemia Vera around 10 years ago after a heart valve repair operation. She takes...

Hi all. I am posting this for my mother aged 83 who was diagnosed with Polycythe...

PFR1937

•4 years ago

10 Replies

First PFIZER VACCINE DONE!

Hi everyone! Just wanted to post that yesterday I had my first Pfizer vaccine at my local Hospital. I'm a NHS stroke medical secretary. I have ET Jak2+ and...

Hi everyone! Just wanted to post that yesterday I had my first Pfizer vaccine a...

Redsab7

•4 years ago

46 Replies

Teeth

Hi, Has anyone experience or knowledge concerning any impact on teeth for MF patients? One of my molars has just cracked and needs removing. I’m 40yo and...

Hi, Has anyone experience or knowledge concerning any impact on teeth for MF pa...

LucyAshtonGeering

•4 years ago

23 Replies

PharmaEssentia Initiates Pivotal Trial of Ropeginterferon alfa-2b to Treat Essential Thrombocythemia

« With a diversifying pipeline, the company is evaluating applications for pegylated interferon to address underserved hematologic cancers »...

« With a diversifying pipeline, the company is evaluating applications for pegyl...

Manouche

•4 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2021

Rechecking JAK2 V617F Allele Burden

Itching-duloxetine

HOW WHITE BLOOD CELLS WORK...

Ropeginterferon alfa-2b versus phlebotomy in low-risk patients with polycythaemia vera (Low-PV study)

Is it time for interferon in low-risk patients with polycythaemia vera?

What is protocol for covid vaccine when on hydroxy urea

Update on vaccine

Any advice?

Whole-genome sequencing shows driver mutations can be acquired very early in life

Integrative Medicine for MPNs

Relaxation massage in ET

Pv with covid

Is it safe to take any covid vaccine if you're on hydroxy

Clinically Extremely Vulnerable

Fertility and essential thrombocythemia

Sodabread

Information on Vaccination

New mutation

MF and platelet transfusions

Double dose of hydroxy

Red Cheeks solution?

Doctor thinks I have PV

Concerned about teeth health

MF

MPN Specialists in California (ET - JAK2)

Platets results

Restless Legs / Body

First PFIZER VACCINE DONE!

Teeth

PharmaEssentia Initiates Pivotal Trial of Ropeginterferon alfa-2b to Treat Essential Thrombocythemia

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