Posts - MPN Voice | HealthUnlocked

MPN Voice

11,264 members•15,746 posts

All posts for September 2024

Hydrea ? Fatty Liver

I have ET JAK2 ..on Hydrea and low dose asprin . Am interested in others experiences… Have just been told after recent abdominal US I have fatty liver...

I have ET JAK2 ..on Hydrea and low dose asprin . Am interested in others experi...

Stargaye

•6 months ago

25 Replies

The worst month ever.

I've been on peg since January this year. I started on 45mcg and everything was fine. Then in his infinite wisdom the haemotologist decided to double the dose....

I've been on peg since January this year. I started on 45mcg and everything was ...

conno61

•6 months ago

37 Replies

Abnormal Megakryocyte

hi Hunter I searched for the meaning of abnormal megakaryocyte and found the following from ChatGPT. I am reproducing it here. “An **abnormal...

hi Hunter I searched for the meaning of abnormal megakaryocyte and found the fo...

Stoosh

•6 months ago

1 Reply

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Covid / anti viral pills

Hi all just want to ask about this nasty Covid going around with mixed symptoms , my husband caught it first with sniffles and runny nose slight cough came out...

Hi all just want to ask about this nasty Covid going around with mixed symptoms ...

Birdlady2021

•6 months ago

2 Replies

Good Results after Pegasys treatment

hi all In my previous note I mentioned that my platelets count was over 450 for more than about 15 years and recently haematologist recommended me to take...

hi all In my previous note I mentioned that my platelets count was over 450 for...

Stoosh

•6 months ago

9 Replies

Update on Roferon

EPguy

•6 months ago

1 Reply

Vinegar - Pegasys interference?

I've been trying to live healthier and lose weight, so I started looking into minimizing glucose spikes. I came across a suggestion to take one tablespoon of...

I've been trying to live healthier and lose weight, so I started looking into mi...

flamboyant_hawking

•7 months ago

19 Replies

Update: Migraines and E.T.

Further to my previous posts I attended hospital on my appointment yesterday at the T.I.A. clinic and had a very intensive consultation with the doctor who...

Further to my previous posts I attended hospital on my appointment yesterday at ...

azaelea

•7 months ago

10 Replies

Abbreviations & Glossary

This is such an open and supportive forum; quite astounding and incredibly helpful. I do struggle sometimes to understand some of the abbreviations used. Is a...

This is such an open and supportive forum; quite astounding and incredibly help...

Huginn

•7 months ago

3 Replies

RSN Jab

I watched an MPN video last week which suggested that the RSN jab would be good for we MPNs and I wondered if others had been advised to have this? I had a...

I watched an MPN video last week which suggested that the RSN jab would be good ...

Bluetop

•7 months ago

13 Replies

Update 8.3.1

I did the CBC at mt hematology office today as planned. Recall this from my last post.. My most recent CBC at the PCP 09/06/24 shows HCT=46.2...

I did the CBC at mt hematology office today as planned. Recall this from my las...

hunter5582

•7 months ago

21 Replies

ET - Peg shortage alternative treatment options

Hello all. Looking for help and info from the fountain of knowledge that people on this site have!! With the Peg shortage it’s certain my medication is going...

Hello all. Looking for help and info from the fountain of knowledge that people ...

cgcheets

•7 months ago

11 Replies

Mylofibrosis

I was diagnosed with MF in February 2024 and have been on 15mg of ruxolitinib twice a day since April. I am not happy with just waiting, I would prefer to...

I was diagnosed with MF in February 2024 and have been on 15mg of ruxolitinib t...

MadgeMc

•7 months ago

17 Replies

Shocked and stunned

Hi Had appointment today with my consultant. I’ve had PV since 2014 and been on Peg since 2018 but over the last year my HGB has dropped to 100 and spleen...

Hi Had appointment today with my consultant. I’ve had PV since 2014 and been o...

PT99

•7 months ago

38 Replies

Iron deficiency

(I'm PV. Diagnosed 14+ years) Finally this week my consultant agrees to give me a course of iron. Does the following dose sound right/enough? 300mg...

(I'm PV. Diagnosed 14+ years) Finally this week my consultant agrees to give ...

MancMermaid

•7 months ago

13 Replies

Rux or Interferon?

hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need phlebotomies, I will soon be diagnosed as a PV patiënt also. I am on...

hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need...

Jomalile

•7 months ago

13 Replies

Aspirin still required after blood counts normalised ?

Hi all, I have had ET and later PV for several years. Thanks to Pegasys my blood counts have all been in the normal range for nearly 1.5 years now. My...

Hi all, I have had ET and later PV for several years. Thanks to Pegasys my blood...

Baby_steps

•7 months ago

8 Replies

Observational REVEAL Study Highlights Potential Risk Factors for Disease Transformation in Polycythemia Vera

Findings presented in an OncLive® interview with Michael R. Grunwald, MD. Findings from the real-world, observational REVEAL study (NCT02252159) presented...

Findings presented in an OncLive® interview with Michael R. Grunwald, MD. Findi...

hunter5582

•7 months ago

10 Replies

migraines

I take Hydroxyurea 1000mg daily 75mg Clopidogrel daily for ET jak2 positive I have had a bad headache sore on right side temple, for 10 days doctor sent me...

I take Hydroxyurea 1000mg daily 75mg Clopidogrel daily for ET jak2 positive ...

Phojespa

•7 months ago

6 Replies

ET in association with MIGRAINES

Thank you to all friends who replied to my question above. I saw GP this afternoon and have been referred to T.I.A. Clinic for check up. Awaiting their call...

Thank you to all friends who replied to my question above. I saw GP this afterno...

azaelea

•7 months ago

8 Replies

Positive autoimmune trace in blood results

Hi, I'm 55, have PV, JAK2. On pegasys inteferon 90mcg every two weeks. Keep fit and well with some niggles I thought normal for a post menopausal woman. But my...

Hi, I'm 55, have PV, JAK2. On pegasys inteferon 90mcg every two weeks. Keep fit ...

Looolooo

•7 months ago

17 Replies

possible treatment change

At hospital visit today ( UK major London hospital), the Consultant indicated that the hospital could probably not source further supplies of Peg interferon...

At hospital visit today ( UK major London hospital), the Consultant indicated t...

gilded

•7 months ago

19 Replies

Long haul travel

I'm flying to Thailand in January from the UK and staying for three weeks. I've got the insurance sorted and booked in at the gp travel clinic in November for...

I'm flying to Thailand in January from the UK and staying for three weeks. I've...

EdwinaJ

•7 months ago

33 Replies

urgent advice

I have finally manage to book a holiday. I am currently on a cruise ship since Friday, heading for the baltics. I have worn masks on coach and busy places and...

I have finally manage to book a holiday. I am currently on a cruise ship since F...

artydutch

•7 months ago

9 Replies

starting ruxolitinib

I have been on peginterferon for 5 years with MF. It has worked well with bloods but not with spleen. But my last 2 tests were not so good haemoglobin up to...

I have been on peginterferon for 5 years with MF. It has worked well with bloods...

caroline_284

•7 months ago

32 Replies

MPN Voice Living with MPNs Day – Saturday 16 November 2024, 8.45 am – 4 pm

UPDATE 24 SEP 24 - NOW FULLY BOOKED FOR ATTENDING IN-PERSON. YOU CAN STILL REGISTER FOR THE LIVE STREAMING. This event is now fully booked for...

UPDATE 24 SEP 24 - NOW FULLY BOOKED FOR ATTENDING IN-PERSON. YOU CAN STILL REGI...

Mazcd

Partner•7 months ago

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Bone marrow edema Cervical 1 & 2 discs, anyone with answer?

Started 10 months ago by waking up 1 morning by severe pain in lower right skull & around the rght ear & cheekbone. Finally an MRI in May shows bone marrow...

Started 10 months ago by waking up 1 morning by severe pain in lower right skull...

Questions4U

•7 months ago

3 Replies

E.T association with Migraines?

Hi all, I haven’t posted for a while but am juggling with a few health problems just now. I was advised to discontinue my Hydroxy 500 mg ( alternate days) by...

Hi all, I haven’t posted for a while but am juggling with a few health problems ...

azaelea

•7 months ago

14 Replies

Video of the MPN Voice patients’ virtual forum – focus on Skin Cancer

The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, is now available to view. This online forum focussing on skin cancer features...

The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, i...

Mazcd

Partner•7 months ago

3 Replies

MPN Voice ‘virtual’ forum focus on myelofibrosis (MF) Streaming live online Wednesday 16 October 2024, 4:30 – 6 pm (16:30 – 18:00 hrs) (BST)

REGISTRATION NOW OPEN FOR THE LIVE STREAMING This MPN Voice ‘virtual’ forum will focus on myelofibrosis (MF). The talks will be presented by: Dr...

REGISTRATION NOW OPEN FOR THE LIVE STREAMING This MPN Voice ‘virtual’ forum wi...

Mazcd

Partner•7 months ago

Be the first to reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2024

Hydrea ? Fatty Liver

The worst month ever.

Abnormal Megakryocyte

Covid / anti viral pills

Good Results after Pegasys treatment

Update on Roferon

Vinegar - Pegasys interference?

Update: Migraines and E.T.

Abbreviations & Glossary

RSN Jab

Update 8.3.1

ET - Peg shortage alternative treatment options

Mylofibrosis

Shocked and stunned

Iron deficiency

Rux or Interferon?

Aspirin still required after blood counts normalised ?

Observational REVEAL Study Highlights Potential Risk Factors for Disease Transformation in Polycythemia Vera

migraines

ET in association with MIGRAINES

Positive autoimmune trace in blood results

possible treatment change

Long haul travel

urgent advice

starting ruxolitinib

MPN Voice Living with MPNs Day – Saturday 16 November 2024, 8.45 am – 4 pm

Bone marrow edema Cervical 1 & 2 discs, anyone with answer?

E.T association with Migraines?

Video of the MPN Voice patients’ virtual forum – focus on Skin Cancer

MPN Voice ‘virtual’ forum focus on myelofibrosis (MF) Streaming live online Wednesday 16 October 2024, 4:30 – 6 pm (16:30 – 18:00 hrs) (BST)

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