Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2022

Myelofibrosis potential development

One of my MF buddies in New Zealand sent me the link below about a discovery relating to a potential ’fix’ for Myelofibrosis. Early days, but who knows? Chris...

One of my MF buddies in New Zealand sent me the link below about a discovery rel...

MFBMT2011

•2 years ago

16 Replies

On to Vonjo

My wife was diagnosed with ET in the early 90's and started on Hydrea then moved to Anagrelide. Then it progressed to MF and she was on Jakafi and then Inrebic...

My wife was diagnosed with ET in the early 90's and started on Hydrea then moved...

Pte82

•2 years ago

11 Replies

Shingrix jab for shingles

Afternoon my friends, Just a quick question of you all, has anyone on here had the new Shingrix jab, I had my first does last Friday, all seemed fine until...

Afternoon my friends, Just a quick question of you all, has anyone on here had t...

Superwoman

•2 years ago

8 Replies

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Biotin?

Is biotin a good supplement to take with PV?

Barbiebreath

•2 years ago

1 Reply

Homeopathy for itch

I’m very new here with a PV diagnosis. My symptoms are mild. (Some itching). As you know, any itching can be torturous though. I see a homeopath and was given...

I’m very new here with a PV diagnosis. My symptoms are mild. (Some itching). As ...

Barbiebreath

•2 years ago

17 Replies

Hepatitis A Ab positive due to interferon? Should I concern it and how to treat it?

Taking interferon 0.5ml/week since last mid August, I had blood test recently and found Hepatitis A Ab positive. other issues associated with taking interferon...

Taking interferon 0.5ml/week since last mid August, I had blood test recently an...

Sam2022

•2 years ago

9 Replies

Should I switch from Hydroxy to other meds or no meds? What would you do?

Hi everyone, I know the answer for this probably lies in the wealth of very informative posts on here, I just never have time to read through all to try find...

Hi everyone, I know the answer for this probably lies in the wealth of very info...

Yakety_Yak

•2 years ago

48 Replies

Hair dye and Hydroxycarbamide

Hi, this question is more for members who have some grey hair, use a permanent hair colour and take Hydroxycarbamide. Does your hair keep the colour? I find...

Hi, this question is more for members who have some grey hair, use a permanent h...

Cakeface

•2 years ago

24 Replies

Could you give me your views on the news link below. I am worried.

I was reading this link below on the news yesterday. What's everyone's thoughts please if you wouldnt mind???? It's got me quite concerned that she had...

I was reading this link below on the news yesterday. What's everyone's thoughts ...

Jody00

•2 years ago

13 Replies

How Treatment Goals Impact MPN Treatment Decisions

This just came across my email from our friends at Patient Empowerment Network. This short presentation is helpful for anyone with a MPN to review, but...

This just came across my email from our friends at Patient Empowerment Network. ...

hunter5582

•2 years ago

5 Replies

Just had my 3 month hemo visit.. :/

Got my blood work done yesterday and everything looked great with the exception of platelets. All rbc and wbc were in normal range but platelets went from 600...

Got my blood work done yesterday and everything looked great with the exception ...

dbus1417

•2 years ago

11 Replies

Good news today 😊

I was diagnosed with PV in September last year. Had venesections over September/November every 2 weeks which brought my hematocrit to 44. It crept up slowly...

I was diagnosed with PV in September last year. Had venesections over September...

Mauritiu

•2 years ago

7 Replies

Raising Awareness for Polycythemia Vera is Key in Increasing Overall Survival

« The final point that we addressed was treatment and to see if certain treatment practices reduce the risk. We were particularly interested in interferon...

« The final point that we addressed was treatment and to see if certain treatmen...

Manouche

•2 years ago

4 Replies

Coming off Ruxolitinib, taking Flucloxacillin and feeling rubbish

I have felt incredibly well on Ruxolitinib since starting it in 2020, apart from brushes with Shingles and Campylobacter. I've now had a two week tapering off...

I have felt incredibly well on Ruxolitinib since starting it in 2020, apart from...

Otterfield

•2 years ago

16 Replies

Confused! Do I have to follow up everything from my consultant with my GP?

I’ve had a pretty frustrating day so would be really keen to hear other people’s experience and advice. I’m female, 32 mins it’s ET. I asked my gp if my...

I’ve had a pretty frustrating day so would be really keen to hear other people’s...

Fjdjdjdjd

•2 years ago

17 Replies

Covid vaccine

Anyone know if we will get a Spring dose of covid vaccine if we’ve already had fourth dose as immune suppressed patients please?

Anyone know if we will get a Spring dose of covid vaccine if we’ve already had f...

HazeBlue

•2 years ago

7 Replies

A webinar with the Patient Empowerment Network - Clinical Trials as an MPN Treatment Option: What You Should Know

PEN (Patient Empowerment Network) is hosting a MPN webinar entitled “Clinical Trials as an MPN Treatment Option: What You Should Know.” Watch online on...

PEN (Patient Empowerment Network) is hosting a MPN webinar entitled “Clinical Tr...

Mazcd

Partner•2 years ago

1 Reply

Stopping Ruxolitinib

I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it...

I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about...

Scaredy_cat

•2 years ago

1 Reply

5th Dose for Us?

I noticed the 4th Covid vaccine dose has become official but I think a 5th dose is being mentioned for people with MPNs. Does anyone know what the duration...

I noticed the 4th Covid vaccine dose has become official but I think a 5th dose ...

Jenny_F

•2 years ago

10 Replies

Bone Marrow test

I have been diagnosed with ET and have the JAK 2 mutation. My hematologist said the bone marrow test is up to me and that it would not change the treatment....

I have been diagnosed with ET and have the JAK 2 mutation. My hematologist said ...

Skater69

•2 years ago

8 Replies

High platelets

Hi all I have moved back to NZ so no longer have amazing Guys Hospital treating me. Am concerned as when I left UK my platelets were hovering around 700. I...

Hi all I have moved back to NZ so no longer have amazing Guys Hospital treating ...

kiwitraveller

•2 years ago

4 Replies

Question about Genetic Testing and BMB

Hi, I am about to appeal a denied cost for genetic testing as part of a bone marrow biopsy. Specifically, the insurance company says that 75 Gene Heme NGS...

Hi, I am about to appeal a denied cost for genetic testing as part of a bone mar...

gvibes

•2 years ago

11 Replies

Instow1

Hello everyone. I was diagnosed with E T. and am taking hyroxycarbamide I have a number of dark blemishes on my forehead. Does anyone know what I can...

Hello everyone. I was diagnosed with E T. and am taking hyroxycarbamide ...

Instow1

•2 years ago

9 Replies

Defining INF effectiveness

With many of us starting Besremi, there is discussion of what dose we are or will be getting. As noted by member mfh7 the clinical studies for Ropeg (Besremi)...

With many of us starting Besremi, there is discussion of what dose we are or wil...

EPguy

•2 years ago

70 Replies

Covid Vax Durability Updates

There is an article from NBC news that discusses this for the JJ Vax....

EPguy

•2 years ago

Be the first to reply

Leg cramps

Hi it’s been awhile since I’ve been on here. I’ve been taking Hydrea for ET for a year now. My platelets are staying in the 500’s. Over the last couple of...

Hi it’s been awhile since I’ve been on here. I’ve been taking Hydrea for ET for ...

Tingle20

•2 years ago

17 Replies

MPN Specialist

Seems like a straightforward task but I’m having trouble finding MPN specialists. I live in the US. North Carolina. Is there a list you have access to?

Seems like a straightforward task but I’m having trouble finding MPN specialists...

Barbiebreath

•2 years ago

9 Replies

High HCT but everything in range

Hi - I was diagnosed ET JAK2+ 3 years ago. I am well-controlled on Hydroxy with platelets 320-360. At my most recent blood test 2 weeks ago, my HCT was 47.3...

Hi - I was diagnosed ET JAK2+ 3 years ago. I am well-controlled on Hydroxy with ...

mjn500

•2 years ago

7 Replies

Blood result question

Hi everyone I finally received a copy of my initial haematology appointment letter. No idea what numbers mean but understand they are still querying PV and...

Hi everyone I finally received a copy of my initial haematology appointment lett...

LittleLuna

•2 years ago

10 Replies

Cream

Hi MPN family anyone got advice on a cream that works for dry skin with being on hydroxycarbamide ,tried coconut creams ,aveeno not working any advice would...

Hi MPN family anyone got advice on a cream that works for dry skin with being on...

ChillyAsh34

•2 years ago

24 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2022

Myelofibrosis potential development

On to Vonjo

Shingrix jab for shingles

Biotin?

Homeopathy for itch

Hepatitis A Ab positive due to interferon? Should I concern it and how to treat it?

Should I switch from Hydroxy to other meds or no meds? What would you do?

Hair dye and Hydroxycarbamide

Could you give me your views on the news link below. I am worried.

How Treatment Goals Impact MPN Treatment Decisions

Just had my 3 month hemo visit.. :/

Good news today 😊

Raising Awareness for Polycythemia Vera is Key in Increasing Overall Survival

Coming off Ruxolitinib, taking Flucloxacillin and feeling rubbish

Confused! Do I have to follow up everything from my consultant with my GP?

Covid vaccine

A webinar with the Patient Empowerment Network - Clinical Trials as an MPN Treatment Option: What You Should Know

Stopping Ruxolitinib

5th Dose for Us?

Bone Marrow test

High platelets

Question about Genetic Testing and BMB

Instow1

Defining INF effectiveness

Covid Vax Durability Updates

Leg cramps

MPN Specialist

High HCT but everything in range

Blood result question

Cream

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