Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for May 2022

Interferon effects on Calr alleleborden

I have seen some people write that this drug does not have much effect on calr AB,it can control the platelets count, but it May have no effects on AB...

I have seen some people write that this drug does not have much effect on calr A...

Violetaaa

•3 years ago

15 Replies

Should over 75 old patient with ET continue to take baby aspirin?

Hello, I am 78, have ET and on Droxia, with platelets in low 600 range. My hematologist insists that I should continue with daily baby aspirin despite USPSTF...

Hello, I am 78, have ET and on Droxia, with platelets in low 600 range. My hema...

Ludek

•3 years ago

4 Replies

Does everyone with PV have high platelets?

Right now I only have slightly elevated RBC, hematocrit, and hemoglobin but all my other cell counts are normal.

Right now I only have slightly elevated RBC, hematocrit, and hemoglobin but all ...

Kdfotigr

•3 years ago

5 Replies

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Second malignancies side effects in hydroxyurea

Hydrea is still considered by many practitioners as the first choice therapy for ET and PV: Patients treated with HU had a significantly higher risk of...

Hydrea is still considered by many practitioners as the first choice therapy for...

Paul1993et

•3 years ago

7 Replies

Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022

This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from...

This was the first in-person forum MPN Voice has held since the end of 2019, it ...

Mazcd

Partner•3 years ago

3 Replies

Refrigerated medicine

I intend to have a driving holiday in the EU,but need to take refridgerated blood injections with me. Can any one recommend a portable fridge suitable for car...

I intend to have a driving holiday in the EU,but need to take refridgerated bloo...

Bakkenist

•3 years ago

2 Replies

Any benefit taking probiotics with hydroxy treatment?

I'm on a 500mg daily regimen maintenance regimen now (and most likely for life) so would like to know if I should keep up with a daily probiotic capsule? Have...

I'm on a 500mg daily regimen maintenance regimen now (and most likely for life)...

Hidden

•3 years ago

5 Replies

Why 2 MPN Communities

Hi all. Having found out I was JAK2 positive last week I started looking for information on MPN. I found my way to Health Unlocked only to find 2 communities....

Hi all. Having found out I was JAK2 positive last week I started looking for inf...

DougyW

•3 years ago

5 Replies

Enteric coated asprin

This is a question for MPNers in Wales please. Does anybody know if enteric coated aspirin are available on prescription?

This is a question for MPNers in Wales please. Does anybody know if enteric coa...

JP1952

•3 years ago

19 Replies

Vaccination advice please

Having had covid just over a month ago, how long should I leave it before getting my 2nd booster (5th jab)? I booked on line and immediately got an...

Having had covid just over a month ago, how long should I leave it before gettin...

JP1952

•3 years ago

14 Replies

Besremi Adverse Effect??

I have experienced what may be arthralgia as a Besremi adverse effect. here is the exchange with the MPN Specialist on this topic. ME Just a head...

I have experienced what may be arthralgia as a Besremi adverse effect. here is ...

hunter5582

•3 years ago

23 Replies

Besremi decision time

Getting to the point where I need to make a decision whether to start Besremi. Just had a CBC yesterday & my Platelets continue to rise. I used to be in the...

Getting to the point where I need to make a decision whether to start Besremi. J...

wateron

•3 years ago

15 Replies

Sct question

Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell...

Hello friends! I'm using Google translate now. I hope you will understand. I ha...

Johan2021

•3 years ago

5 Replies

I heard from my insurance company today.

I was approved for Besremi. ❤️🙏❤️

Barbiebreath

•3 years ago

11 Replies

Restricted from fight mpn site

I have been restricted on the fight MPN site and have no idea why or any idea how to find out! anyone else? X

I have been restricted on the fight MPN site and have no idea why or any idea ho...

SarahPV

•3 years ago

6 Replies

Covid Antibodies

Hi has anyone with PV who has had Covid done an antibody test ? I had a negative PCR test done in September last year and was asked to do an antibody test...

Hi has anyone with PV who has had Covid done an antibody test ? I had a negati...

Hocus58

•3 years ago

7 Replies

One Dr's comments on Besremi approval

Nothing new for most of us here, but nice to see recent good words from a member of MD Anderson Cancer Center on what many of us are now taking....

Nothing new for most of us here, but nice to see recent good words from a member...

EPguy

•3 years ago

Be the first to reply

Combining Hydroxy with Anagrelid

Hi, my husband has ET and recently started taking Anagrelid in combination with Hydroxyurea. We noticed today after the lab test that his white blood cells...

Hi, my husband has ET and recently started taking Anagrelid in combination with ...

AdaJesus_Uk

•3 years ago

5 Replies

Potential PV diagnosis and pregnancy

I’m 30 and my husband and I are trying for a baby. Now I’m terrified of what this diagnosis will mean for a future pregnancy. Are there any other women who...

I’m 30 and my husband and I are trying for a baby. Now I’m terrified of what thi...

Kdfotigr

•3 years ago

3 Replies

Ruxolitinib and constipation

I've recently had my dose of ruxolitinib increased from 2 X5 mg to 1x5 and 1x 10 mg a day. I seem to have become constipated. I see it is a possible side...

I've recently had my dose of ruxolitinib increased from 2 X5 mg to 1x5 and 1x 10...

Scaredy_cat

•3 years ago

4 Replies

Forthcoming trials

Hi, All, I was asked about trial/ research information from someone. I said I’d private message them hey presto who was it. I thought I noted the name...

Hi, All, I was asked about trial/ research information from someone. I said I’d ...

Wyebird

•3 years ago

Be the first to reply

Another Comparison of PEG to Besremi

I had this in a reply thread, figured it's worth its own. This recent report shows PEG and Bes are not the same in the context of Hep C. -- No way to say...

I had this in a reply thread, figured it's worth its own. This recent report sh...

EPguy

•3 years ago

6 Replies

Besremi

Just got approved for Besremi!! So happy! Took 2 doses of Pegasys and I finally got approved on my 3rd appeal! What are the most common side effects that I...

Just got approved for Besremi!! So happy! Took 2 doses of Pegasys and I finally...

JeanieRN

•3 years ago

9 Replies

Any advice for first Pegasys injection?

Tomorrow will be my first Pegasys injection. I realize I may have some flu type symptoms afterwards but wondered if anyone has any advice on the best way to...

Tomorrow will be my first Pegasys injection. I realize I may have some flu type ...

Wewo01

•3 years ago

8 Replies

Flying with Besremi in USA

My first time with flying with Besremi in the USA following the PharmaEssentia recommendation that the medication not go through the X-ray scanner. Supposed...

My first time with flying with Besremi in the USA following the PharmaEssentia r...

hunter5582

•3 years ago

3 Replies

Advice please - Raynauds and ET

Hi everyone, I am really struggling at the moment, diagnosed with ET JAK + in 2016, currently on clopidogrel and Hydroxy, splenectomy and small bowel resection...

Hi everyone, I am really struggling at the moment, diagnosed with ET JAK + in 20...

Janlol

•3 years ago

13 Replies

Peg jab

Thanks to everyone who offered tips on self-jabbing. It was a breeze although the only slight problem encountered was wrenching the caps off the needle and...

Thanks to everyone who offered tips on self-jabbing. It was a breeze although t...

gilded

•3 years ago

8 Replies

Anxiety and PV

Hi wondering if anyone knows if stress and anxiety has any bearing on PV. I was recently diagnosed in February. This was after having a horrendous time with...

Hi wondering if anyone knows if stress and anxiety has any bearing on PV. I was...

Hocus58

•3 years ago

9 Replies

Besremi and Phlebotomy

Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my...

Hello, I had my first PB last week since starting Besremi (January 2022). Bes...

Elizka

•3 years ago

1 Reply

5th COVID jab

Hi. I’ve booked my 5 th jab online, successfully, for exactly 3 months after number 4. Have asked GP (receptionists) for my letter of proof of ET. They...

Hi. I’ve booked my 5 th jab online, successfully, for exactly 3 months after num...

Peachjoy

•3 years ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2022

Interferon effects on Calr alleleborden

Should over 75 old patient with ET continue to take baby aspirin?

Does everyone with PV have high platelets?

Second malignancies side effects in hydroxyurea

Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022

Refrigerated medicine

Any benefit taking probiotics with hydroxy treatment?

Why 2 MPN Communities

Enteric coated asprin

Vaccination advice please

Besremi Adverse Effect??

Besremi decision time

Sct question

I heard from my insurance company today.

Restricted from fight mpn site

Covid Antibodies

One Dr's comments on Besremi approval

Combining Hydroxy with Anagrelid

Potential PV diagnosis and pregnancy

Ruxolitinib and constipation

Forthcoming trials

Another Comparison of PEG to Besremi

Besremi

Any advice for first Pegasys injection?

Flying with Besremi in USA

Advice please - Raynauds and ET

Peg jab

Anxiety and PV

Besremi and Phlebotomy

5th COVID jab

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