Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for April 2022

Is there a form I need for Pegasys like there is for Besremi for me and my Dr to fill out?

I have been on the net looking to see if there was a form for Pegasys and I found nothing. Since my insurance denied my request for Besremi, I have decided to...

I have been on the net looking to see if there was a form for Pegasys and I foun...

Wewo01

•3 years ago

5 Replies

Travel Insurance

Hi everyone I have family in the US and I may have to travel at very short notice - Tuesday/Wednesday maybe - as one of my family members is seriously ill. I...

Hi everyone I have family in the US and I may have to travel at very short notic...

Megabyte

•3 years ago

30 Replies

ET long term concerns

Hi, I have ET which was diagnosed after a blood clot was found on my brain and blood tests revealed I had a positive JAK 2 result in 2019, I do not know anyone...

Hi, I have ET which was diagnosed after a blood clot was found on my brain and b...

Bear111

•3 years ago

16 Replies

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5th Vaccine

Hello. I have been to the vaccination centre this morning for my 5th vaccine who said they will not give it to me without a letter from either the GP or the...

Hello. I have been to the vaccination centre this morning for my 5th vaccine who...

Maisie10

•3 years ago

30 Replies

Hydroxy Side effect

Previously I have reported no side effects , but as time goes on I’m having very strong dreams that are difficult to leave . Starting at about 4. / 5 am...

Previously I have reported no side effects , but as time goes on I’m having very...

Mostew

•3 years ago

28 Replies

5th COVID jab done

Hello all, I had my 5th COVID pfizer jab at the GP yesterday. All is well (apart from the usual arm ache). I wrestled with the decision to take yet another jab...

Hello all, I had my 5th COVID pfizer jab at the GP yesterday. All is well (apart...

Redsab7

•3 years ago

3 Replies

How long did you wait for jak2 calr mpl results

I have today had the mutations tests done. I think there was 6 tubes in all ao at least they are being thorough. I was told it takes 8 weeks for results. Is...

I have today had the mutations tests done. I think there was 6 tubes in all ao a...

Notdiagnosed

•3 years ago

7 Replies

Forums

Hi, does anyone know if there's likely to be a forum in London this year? Thanks

Hi, does anyone know if there's likely to be a forum in London this year? Thanks...

Trueblue8

•3 years ago

9 Replies

Statins

Hi there everyone, I’ve been living with ET for 2 years now & am currently on 500g daily dose hydroxycarbamide , 2.5g lisinopril for slightly high blood...

Hi there everyone, I’ve been living with ET for 2 years now & am currently on 50...

Sashie

•3 years ago

25 Replies

Bone marrow biopsy 2 times same day

Today I did BMB, I have been clarified why I couldn’t eat for 4 hours , was related to intravenous sedation , they offered me 2 type of sedation but I chose...

Today I did BMB, I have been clarified why I couldn’t eat for 4 hours , was rela...

Inverter

•3 years ago

28 Replies

Besremi - after the 6th dose kept at 200 mcg

Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 6th dose (results of 4/28/2022; 1st dose...

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

Pat032018

•3 years ago

8 Replies

Iron Levels

Thought it might be interesting to some to attach the actual numbers to what we have been discussing for those interested in what drives erythrocytosis and why...

Thought it might be interesting to some to attach the actual numbers to what we ...

hunter5582

•3 years ago

24 Replies

Update

Hello friends. I thought I would let you know how things are going here at Southampton Hospital. It's now about three weeks since I finished the debulking...

Hello friends. I thought I would let you know how things are going here at South...

Otterfield

•3 years ago

45 Replies

Change of clinic

I had a telephone appointment with my haematologist on Monday but instead it was with a nurse led clinic. I have apparently been handed over to this clinic. I...

I had a telephone appointment with my haematologist on Monday but instead it was...

Balser

•3 years ago

14 Replies

Jakafi (Rux) vs Besremi Side Effects

Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine....

Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi ...

EPguy

•3 years ago

19 Replies

Anxious and concerned

Hi, i was diagnosed with ET in October 2019 after feeling awful for a long time, eventually a blood clot on my brain was diagnosed followed by a positive JAK 2...

Hi, i was diagnosed with ET in October 2019 after feeling awful for a long time,...

Bear111

•3 years ago

11 Replies

5th Covid Jab

Asked my Heamo dept about having a 5th jab, I had 4th jab 3 months ago. They said not necessary and to wait 6 months. After reading comments on here and on...

Asked my Heamo dept about having a 5th jab, I had 4th jab 3 months ago. They sa...

Jeftheref

•3 years ago

7 Replies

Crazy (but great) result from bomedemstat!

I wasn’t going to post until next month but Monday’s bloodwork was shocking. In a good way. My platelets began at 1.5 million two months ago, when I began the...

I wasn’t going to post until next month but Monday’s bloodwork was shocking. In...

Miriammusic

•3 years ago

16 Replies

Ibuprofen gel

Can anyone advise me please. I am taking daily aspirin and hydroxycarbamide and I know I cannot take oral ibuprofen but I have a painful arthritic shoulder at...

Can anyone advise me please. I am taking daily aspirin and hydroxycarbamide and ...

Ozziepig

•3 years ago

4 Replies

My husband and I both diagnosed at the same time with ET JAK2

Hi everyone. ET is not a rare illness in our household. I’m 69 and Dave is 74. Dave has no symptoms and I’ve got itchy skin patches. This is a great chat line...

Hi everyone. ET is not a rare illness in our household. I’m 69 and Dave is 74. D...

Na56

•3 years ago

36 Replies

Overlapping Hydroxycarbamide with Pegasys

I’m 57, living in the USA, and have CalR mutated ET. I took hydoxycarbamide for 8 years at an average of 750 mg per day which kept the platelet count to...

I’m 57, living in the USA, and have CalR mutated ET. I took hydoxycarbamide for...

LongETinUS

•3 years ago

21 Replies

Hydroxycarbamide, PV and skin cancer

I have been made aware that HU can possibly lead to skin cancer and I know it’s best to keep out of the sun. Does anybody know the precise reason why this...

I have been made aware that HU can possibly lead to skin cancer and I know it’s ...

Barb17

•3 years ago

5 Replies

New aspirin guidelines

I am 67, diagnosed with PV, and taking daily low dose aspirin along with HU.I'm reading today that USPSTF (Physician task force) is no longer recommending low...

I am 67, diagnosed with PV, and taking daily low dose aspirin along with HU.I'm ...

Ashtin

•3 years ago

4 Replies

Update

Had blood drawn for tests at Guy's Cancer Centre, the first blood tests since my probable diagnosis. I'm on strong antibiotics for another issue, so hope that...

Had blood drawn for tests at Guy's Cancer Centre, the first blood tests since my...

Hidden

•3 years ago

1 Reply

Update 6.4

Good news from the most recent CBC. HCT back down to 43.8. As my iron levels continue to improve, erythropoiesis is naturally also increasing. HCT = 46.0 on...

Good news from the most recent CBC. HCT back down to 43.8. As my iron levels co...

hunter5582

•3 years ago

41 Replies

Green tea

Article in Medical News Today

Mostew

•3 years ago

Be the first to reply

Green tea

A 2020 database reviewTrusted Source of epidemiological and experimental studies in humans produced inconsistent results as well as limited evidence of the...

A 2020 database reviewTrusted Source of epidemiological and experimental studies...

Mostew

•3 years ago

4 Replies

Besremi shot #7

Hi everyone, 7th Besremi shot was last Friday and I did 125 mcg. I stayed at 100 mcg for about a month or more, but increased it a bit to avoid a phlebotomy...

Hi everyone, 7th Besremi shot was last Friday and I did 125 mcg. I stayed at 10...

Elizka

•3 years ago

7 Replies

Introduction with questions - MPNs & Crispr Cas9 Gene editing

Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate...

Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I...

Hello94

•3 years ago

6 Replies

Bone marrow biopsy first time

First time bone marrow biopsy. I just got call my bone marrow biopsy Have been booked for Friday and I would like to hear more about other people experience....

First time bone marrow biopsy. I just got call my bone marrow biopsy Have been b...

Inverter

•3 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2022

Is there a form I need for Pegasys like there is for Besremi for me and my Dr to fill out?

Travel Insurance

ET long term concerns

5th Vaccine

Hydroxy Side effect

5th COVID jab done

How long did you wait for jak2 calr mpl results

Forums

Statins

Bone marrow biopsy 2 times same day

Besremi - after the 6th dose kept at 200 mcg

Iron Levels

Update

Change of clinic

Jakafi (Rux) vs Besremi Side Effects

Anxious and concerned

5th Covid Jab

Crazy (but great) result from bomedemstat!

Ibuprofen gel

My husband and I both diagnosed at the same time with ET JAK2

Overlapping Hydroxycarbamide with Pegasys

Hydroxycarbamide, PV and skin cancer

New aspirin guidelines

Update

Update 6.4

Green tea

Green tea

Besremi shot #7

Introduction with questions - MPNs & Crispr Cas9 Gene editing

Bone marrow biopsy first time

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