Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for September 2018

ET Calr +

i m from switzerland and i am ET Carl + with 1.690000 platelets when i started hydre (litalir in CH) . After 1 month the platelets are still at 1.300000 with 2...

i m from switzerland and i am ET Carl + with 1.690000 platelets when i started h...

Danack

•6 years ago

4 Replies

Headaches

Hi all Just wondering if anybody has any advice on how to manage headaches better? I'm currently on pegasys and the headaches the day after injecting are very...

Hi all Just wondering if anybody has any advice on how to manage headaches bette...

Sheila-collins

•6 years ago

12 Replies

Triple Negative --- MPN

Has anyone had experience of being diagnosed being triple negative? I started out diagnosed with ET and now look like I'm myleofibrosis. I know I'm JAK2-...

Has anyone had experience of being diagnosed being triple negative? I started ...

jeanr

•6 years ago

12 Replies

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Travel tips - Pegylated Interferon

Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling with interferon? We go away next week and it’ll be the first time we are away...

Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling ...

LinaZW

•6 years ago

22 Replies

Good news

Just wanted to share the good news I got at my last check-up on Monday. All my blood results are within normal range for the first time in a long time. ! I was...

Just wanted to share the good news I got at my last check-up on Monday. All my b...

Marossi

•6 years ago

14 Replies

PV advice

Go9d evening. My husband and I are abroad in a small town. He has PV jak2 pos and was bitten by some type of insect yesterday. His hand has blown right up. We...

Go9d evening. My husband and I are abroad in a small town. He has PV jak2 pos an...

scousesbird

•6 years ago

9 Replies

Interferon or not???

HI all, Im ET triple neg 2 years diagnosed. I initially tried Anagrelide but suffered side effects and it made little difference to my platelet level. So went...

HI all, Im ET triple neg 2 years diagnosed. I initially tried Anagrelide but suf...

SuET2017

•6 years ago

12 Replies

AFib, oh no...

Hello peeps, Anyone taking a blood thinner for AFib, which one? Also anyone usung a blood thinner and aspirin? It seems to be a slippery slope. Any experiences...

Hello peeps, Anyone taking a blood thinner for AFib, which one? Also anyone usun...

Indigo42916

•6 years ago

9 Replies

Pegasys

Hi all. I have been on Interferon alpha injections (anything between 2 and 5 days a week) for the last 8 years. I am going to be changed to pegasys ( supply...

Hi all. I have been on Interferon alpha injections (anything between 2 and 5 day...

teddy21

•6 years ago

14 Replies

Iron levels.

Dx July 16. I started Pegasys dec 16. My consultant said my iron levels would never return to normal. At the London conference I was told they would slowly...

Dx July 16. I started Pegasys dec 16. My consultant said my iron levels would ne...

EleanorPV

•6 years ago

9 Replies

Anyone had a cardiac event monitor?

Hi all. I have been told that I have to have a cardiac event monitor fitted for 3 days, following a TIA earlier this summer. I would appreciate any advice on...

Hi all. I have been told that I have to have a cardiac event monitor fitted for ...

Ovingite

•6 years ago

16 Replies

Skull changing

Can any one tell me what can be treatment to fix it

Vj626

•6 years ago

1 Reply

Haematologist Scotland

Hi Guys, After my haem appointment being cancelled at short notice plus they don’t know when the next one will be, I’ve decided to ask my gp for a private...

Hi Guys, After my haem appointment being cancelled at short notice plus they don...

Aime

•6 years ago

44 Replies

ET JAK2 on Pegasys and Clopidogrel

I'm concerned because my platelet level has dropped to normal range from 4 weeks of taking pegasys but my haeme still only sees me 7 weeks with no comment on...

I'm concerned because my platelet level has dropped to normal range from 4 weeks...

JackLina

•6 years ago

16 Replies

ET, fatigue and vegetarian diet

Hi all! I was diagnosed with ET JAK2 + about 6yrs ago after having the classic symptoms of fatigue, itching, pins and needles, migraines etc. I'd been having...

Hi all! I was diagnosed with ET JAK2 + about 6yrs ago after having the classic ...

LRH1977

•6 years ago

19 Replies

Night Sweats and itching

I am a 49 year old male diagnosis with pv jak2 positive in March this year. I find the posts on this site extremely informative and helpful and it is good to...

I am a 49 year old male diagnosis with pv jak2 positive in March this year. I f...

OxonAndy

•6 years ago

6 Replies

Manchester Forum

Hi I am giving a short talk at the Manchester forum in a couple of weeks about what it is like to live with ET. This is something that scares me immensely but...

Hi I am giving a short talk at the Manchester forum in a couple of weeks about w...

stephsmith

•6 years ago

22 Replies

Weight gain and Jakafi 20mg

needing to know how much weight is gined while on Jakafi 20mg

rkhabtec

•6 years ago

6 Replies

Diagnosed with PV 3 weeks ago and I’m only 32

Hi friends, I have been diagnosed with PV three weeks ago and my numbers are that high, one blood withdrawal and my hemoglobin is down to 14.7 and my HTC is...

Hi friends, I have been diagnosed with PV three weeks ago and my numbers are tha...

Yarw

•6 years ago

32 Replies

Like mother like daughter, like grandma!🍼

My beautiful granddaughter,madison made her dramatic appearence today after 3 tense days of of waiting.originally was told she was being delivered by...

My beautiful granddaughter,madison made her dramatic appearence today after 3 te...

Tico

•6 years ago

30 Replies

Erythropoietin injections. Immature cells.

Hello. Has anyone had erythropoietin injections? If so, what can you tell us about benefits/side effects. My husband’s hgb is going down and his consultant...

Hello. Has anyone had erythropoietin injections? If so, what can you tell us abo...

Fika500

•6 years ago

19 Replies

Joints and Bone Pain and Hydroxycarbamide???

Good Morning All Hope everyone is doing as well as possible, if not I hope things improve for you. Question for the ladies.... I'm 100 days into...

Good Morning All Hope everyone is doing as well as possible, if not I hope thing...

pontygirl

•6 years ago

26 Replies

A phase II study of ruxolitinib in combination with azacytidine for MF Patients

http://www.bloodjournal.org/content/early/2018/09/05/blood-2018-04-846626?sso-checked=true ‘ A greater than 50% reduction in palpable spleen length at 24 weeks...

http://www.bloodjournal.org/content/early/2018/09/05/blood-2018-04-846626?sso-ch...

Paul123456

•6 years ago

3 Replies

MPN MEds card

Hi everyone. Can anyone tell me how to replace my MPN Meds. Card please. Have had so many changes its full and I need more space to update it. My best...

Hi everyone. Can anyone tell me how to replace my MPN Meds. Card please. Have...

Garden987

•6 years ago

7 Replies

Water consumption

I get confused why we need to drink a lot of water:/ Is it because of the Hydrea we are putting into our body or because of the MPN we have been diagnosed...

I get confused why we need to drink a lot of water:/ Is it because of the Hydrea...

mbr8076

•6 years ago

17 Replies

Update to all my fellow MPN'S

Had a problem with my computer and had to reregister so that's why I have a different handle now. Hi not posted for a while due to many things. Saw Haemo man...

Had a problem with my computer and had to reregister so that's why I have a diff...

Smf1003

•6 years ago

4 Replies

side effects

It’s been a long year since I was diagnosed with ET + Jak 2 positive and already fought and battled my way through the side effects of Hydroxy, Anagrelide and...

It’s been a long year since I was diagnosed with ET + Jak 2 positive and already...

MaggieMagpie49

•6 years ago

15 Replies

Hi all!

I am going in this morning for another hydration shower nfusion, which seems to help for energy, even though I drink Tons of water. I am also taking one...

I am going in this morning for another hydration shower nfusion, which seems to ...

Sheryljean

•6 years ago

3 Replies

CAR-T on the NHS - promising news

Thought I’d post this link about the NHS now using CAR-T therapy. Very exciting treatment, especially with regards to how it might be used in the future...

Thought I’d post this link about the NHS now using CAR-T therapy. Very exciting ...

Timjonze

•6 years ago

2 Replies

Pneumonia Jabs

I went for my annual review at the doctors the other day and I asked when the flu/pneumonia jabs were starting. I was told that nobody in the UK can get ahold...

I went for my annual review at the doctors the other day and I asked when the fl...

jillydabrat

•6 years ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2018

ET Calr +

Headaches

Triple Negative --- MPN

Travel tips - Pegylated Interferon

Good news

PV advice

Interferon or not???

AFib, oh no...

Pegasys

Iron levels.

Anyone had a cardiac event monitor?

Skull changing

Haematologist Scotland

ET JAK2 on Pegasys and Clopidogrel

ET, fatigue and vegetarian diet

Night Sweats and itching

Manchester Forum

Weight gain and Jakafi 20mg

Diagnosed with PV 3 weeks ago and I’m only 32

Like mother like daughter, like grandma!🍼

Erythropoietin injections. Immature cells.

Joints and Bone Pain and Hydroxycarbamide???

A phase II study of ruxolitinib in combination with azacytidine for MF Patients

MPN MEds card

Water consumption

Update to all my fellow MPN'S

side effects

Hi all!

CAR-T on the NHS - promising news

Pneumonia Jabs

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