Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2018

Hydroxyurea with eliquis or aspirin

My husband was diagnosed with Polycythemia vera and chronic thrombosis in the left leg. I am concerned of the side affects of Eliquis with Hydroxyurea. If...

My husband was diagnosed with Polycythemia vera and chronic thrombosis in the le...

sandswims

•6 years ago

10 Replies

Et

Hydroxyurea

Petsch

•6 years ago

3 Replies

Lymphona?

Problems with lymph glands - lymphona- what are the likely treatments?

Leonardo

•6 years ago

2 Replies

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Lymph nodes

Hello all, Anyone ever have enlarged lymph nodes in neck? Scheduled for a scan, it is worrisome. Take care.

Hello all, Anyone ever have enlarged lymph nodes in neck? Scheduled for a scan,...

Indigo42916

•6 years ago

4 Replies

Hydroxy dosage

Hi Everyone. Hope you are all well. So tomorrow is the big day. Im starting on Hydroxy, 2 tablets a day. Just wanted to ask is it ok to take both tablets...

Hi Everyone. Hope you are all well. So tomorrow is the big day. Im starting on H...

mjfin72

•6 years ago

39 Replies

Inflammation?

Does anyone else struggle with inflammation? I am 51 years old, and was diagnosed with PV two years ago. I began taking Peg-Interferon 3 months ago, and at...

Does anyone else struggle with inflammation? I am 51 years old, and was diagnose...

clevemic

•6 years ago

5 Replies

Happy happy happy

On Thursday I had my first appointment with a new haematologist who is more of a specialist in MPN’s than my previous haematologist. Thank goodness I asked Maz...

On Thursday I had my first appointment with a new haematologist who is more of a...

Nickthedevil

•6 years ago

33 Replies

Anticoagulant inj & PV

Hi I am waiting to see a haematologist to confirm suspected PV. My son aged 18 is currently in hospital with a blocked bowel & is on a drip. They have given...

Hi I am waiting to see a haematologist to confirm suspected PV. My son aged 18 i...

Vicky_b

•6 years ago

4 Replies

Hospital appointment

Just after some advice went to my follow up haematology appointment today and my platelets were 519, 3 weeks ago they were 552. At diagnosis of PV in December...

Just after some advice went to my follow up haematology appointment today and my...

Poppy112

•6 years ago

5 Replies

50mg prednisone steroid

I’ve just been prescribed a 7 day course of the steroid Prednisone. I’ve now read that a side effect is that it increases platelets!!!! Is this correct.? I...

I’ve just been prescribed a 7 day course of the steroid Prednisone. I’ve now rea...

130396

•6 years ago

12 Replies

Yes! all counts in normal range but...

Went for my check at the hospital on Tuesday and was so happy to find all my counts within 'normal' range. I had 2 colds in a row and am left with a dry tickly...

Went for my check at the hospital on Tuesday and was so happy to find all my cou...

Mica11

•6 years ago

9 Replies

Anxious

Ive just hit 60yrs old diagnosed wirh ET CALR+ 2017. Platelets 932. Im very anxious about having to take HU if/when my platelets go over 1000. We are planning...

Ive just hit 60yrs old diagnosed wirh ET CALR+ 2017. Platelets 932. Im very anxi...

Sandra9Burt

•6 years ago

8 Replies

Jak2+ Thrombocytosis

Hi All, Thanks for all the encouraging words since my recent diagnosis. I am wondering if anyone knows the purpose of taking drugs to lower platelets. I am...

Hi All, Thanks for all the encouraging words since my recent diagnosis. I am wo...

Meatloaf9

•6 years ago

18 Replies

Myelofibrosis life expectancy

Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of...

Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 1...

Hidden

•6 years ago

5 Replies

Trip to London for my scan

Well, I made it to Guy's and St Thomas's on Monday for an MRI ferriscan to see what iron overload has done to my body. After 17 attempts by various people...

Well, I made it to Guy's and St Thomas's on Monday for an MRI ferriscan to see w...

beetle

•6 years ago

11 Replies

JAK2 results time?

Hello, I'm being investigated for polycythemia and had the JAK2 gene test yesterday (through my GP). How long have people waited to get a result? I gather it...

Hello, I'm being investigated for polycythemia and had the JAK2 gene test yester...

Curlygal

•6 years ago

16 Replies

Newly diagnosed with ET and wondering

Hello, Recently diagnosed with JAK2+ ET, Platelets 480 to 550 over last yr. Does anyone recommend a specialist in this disease, live in southeast ohio near...

Hello, Recently diagnosed with JAK2+ ET, Platelets 480 to 550 over last yr. Doe...

Meatloaf9

•6 years ago

10 Replies

Heart racing

I was diagnosed with MPN this year at 26 years old. I have ET/Jak2+. I notice my heart starts racing sometimes while I eat or when I get up. I’m not a very...

I was diagnosed with MPN this year at 26 years old. I have ET/Jak2+. I notice my...

Cathy426

•6 years ago

6 Replies

Update

Diagnosed some 4 years ago. HCT was 0.612 Platelets 1162, regular venesection, Hydro, aspirin, all came down ok.. About three or 4 months ago, migrating to...

Diagnosed some 4 years ago. HCT was 0.612 Platelets 1162, regular venesection, H...

shiftzz

•6 years ago

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Worsening stomach upsets ?

Hi all , does anyone find HU / Et causes them to have episodes of tummy upset?mi seem to be getting it more often , i only take 500 mg HU daily , not has much...

Hi all , does anyone find HU / Et causes them to have episodes of tummy upset?mi...

catwoman2015

•6 years ago

9 Replies

Cure

I can not wait to find a cure for MPN!!! 🙏🏻🙏🏻🙏🏻

Cathy426

•6 years ago

13 Replies

What causes night sweats in ET?

Hi all. I was experiencing heavy night sweats all year around for years before I was diagnosed with JAK2 ET, but I now understand that ET is behind it. However...

Hi all. I was experiencing heavy night sweats all year around for years before I...

Ovingite

•6 years ago

3 Replies

Bone pain

Hi does anyone suffer with the bone pain associated with PMF. I am have early stage but recently I have had some pain deep in my arms. It’s not all the time...

Hi does anyone suffer with the bone pain associated with PMF. I am have early st...

Skye333

•6 years ago

18 Replies

Ruxolitinib

Have been on 30grms of Ruxolitinib now for nearly 6mths and thankfully I have never felt so well. No itching which was severe and bloods are great. Brilliant...

Have been on 30grms of Ruxolitinib now for nearly 6mths and thankfully I have ne...

waddles22

•6 years ago

4 Replies

MF low risk to intermediate

Hi fellow MPN'ers, After 21 years, my time of low risk primary myelofibrosis has come to an end. In the middle of last year my haemoglobin level was 104g/L...

Hi fellow MPN'ers, After 21 years, my time of low risk primary myelofibrosis has...

Simon96

•6 years ago

14 Replies

Really struggling on pegasys

Hi everyone I have been on peg for around three months and have slowly had them increased every visit to guys I am now on 180 ug per week and my counts have...

Hi everyone I have been on peg for around three months and have slowly had them ...

Rastavapa

•6 years ago

3 Replies

Hair!

Hello, I know to a lot of people this will seem like a trivial question, but I was wondering whether people still have hair colours and highlights and...

Hello, I know to a lot of people this will seem like a trivial question, but I w...

Juliet46

•6 years ago

22 Replies

Peg side effects

I would like to know if anyone had any migraine and neck stiffness issues? I thought I was doing so well only a few weeks into Peg but the other week I had 5...

I would like to know if anyone had any migraine and neck stiffness issues? I tho...

Hidden

•6 years ago

15 Replies

Interferon for MPN's video - take a look

https://www.patientpower.info/video/the-pros-and-cons-of-interferon-as-an-mpn-treatment?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=M

https://www.patientpower.info/video/the-pros-and-cons-of-interferon-as-an-mpn-tr...

Jocko

•6 years ago

Be the first to reply

Good video/transcript on Interferon/Peg

https://www.patientpower.info/video/the-pros-and-cons-of-interferon-as-an-mpn-treatment?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=M

https://www.patientpower.info/video/the-pros-and-cons-of-interferon-as-an-mpn-tr...

Paul123456

•6 years ago

Be the first to reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2018

Hydroxyurea with eliquis or aspirin

Et

Lymphona?

Lymph nodes

Hydroxy dosage

Inflammation?

Happy happy happy

Anticoagulant inj & PV

Hospital appointment

50mg prednisone steroid

Yes! all counts in normal range but...

Anxious

Jak2+ Thrombocytosis

Myelofibrosis life expectancy

Trip to London for my scan

JAK2 results time?

Newly diagnosed with ET and wondering

Heart racing

Update

Worsening stomach upsets ?

Cure

What causes night sweats in ET?

Bone pain

Ruxolitinib

MF low risk to intermediate

Really struggling on pegasys

Hair!

Peg side effects

Interferon for MPN's video - take a look

Good video/transcript on Interferon/Peg

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