Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2018

Six months on Pegasys

I started Peg at 45 mcg weekly late March and built up slowly to around 80-90 mcg. At last venesection mid March, my HB 135, RBC 6.32, Platelets 641 and WBC...

I started Peg at 45 mcg weekly late March and built up slowly to around 80-90 mc...

Paul123456

•6 years ago

10 Replies

Login details

Hi all Does everyone else have to put their log in details every time you want to look at the site. Is there an App for Healthunlocked? Thank you Janet x

Hi all Does everyone else have to put their log in details every time you want t...

Skye333

•6 years ago

2 Replies

Medication question

Hi. I am new here and on day 5 with hydroxyurea. Does the nausea ever get better?

Hi. I am new here and on day 5 with hydroxyurea. Does the nausea ever get better...

doglover57

•6 years ago

12 Replies

Want to take advantage of all our features? Just log in!

Here comes a rant!

I was due my 10 week check up yesterday but for the last 3 previous check ups I have arrived expecting to see my consultant only to find she is not there and I...

I was due my 10 week check up yesterday but for the last 3 previous check ups I ...

jillydabrat

•6 years ago

16 Replies

Mr Smaug! MPN Therapy!

Someone recently asked me if I would put a photo here of my cat! So... here he is! This is Mr Smaug. From a MPN point of view, he is wonderful therapy. Mr...

Someone recently asked me if I would put a photo here of my cat! So... here he i...

stillkicking

•6 years ago

27 Replies

Does anyone else feel like this?

I always make myself go gym before work but, this last week I have struggled to go at all. This morning I dont even have the energy to get a shower, I finally...

I always make myself go gym before work but, this last week I have struggled to ...

Avamia94

•6 years ago

22 Replies

Greeting

Hi all. My name is joe. im new here. i just been diagnose with pv last month. nothing much i know about this illness. i just want to say that i feel very glad...

Hi all. My name is joe. im new here. i just been diagnose with pv last month. no...

Alexander-Dzul

•6 years ago

10 Replies

Make People Notice in September, blood cancer awareness month

MPNs are very rare, which means that not many people know about them, what they are, how they make us feel. How many times have you told people that you have...

MPNs are very rare, which means that not many people know about them, what they ...

Mazcd

Partner•6 years ago

14 Replies

JAK2 Negitive

I have JAK 2 -ve but my RBC and HGB is high in JAK 2 -ve is there any possibility that i have PV? Please help me with your experiences!

I have JAK 2 -ve but my RBC and HGB is high in JAK 2 -ve is there any possibilit...

Waheed1

•6 years ago

3 Replies

Hydroxy question

When my haemotolgist issued me with hydroxycarbamide tablets he gave me a box of a 100 which will last me 6 months as I only take 1 every other day, I see him...

When my haemotolgist issued me with hydroxycarbamide tablets he gave me a box of...

john0084

•6 years ago

14 Replies

Childrens flu precaution

Is it safe to be close to children having flu precautions

MariaB27

•6 years ago

8 Replies

Manchester forum today!

It was great to meet so many of you today at the Manchester forum. Some people asked for my just giving page so that they could make a donation towards my...

It was great to meet so many of you today at the Manchester forum. Some people ...

stephsmith

•6 years ago

2 Replies

MPN's anyone else have a raised red cell volume ?

hi all just wondered any one else had a raised red cell volume along with the other usual raised counts ie white hemoglobin ,haemorcrit RD count etc it's the...

hi all just wondered any one else had a raised red cell volume along with the ot...

nightssky

•6 years ago

11 Replies

Celtic background & thalassaemia

Hi, When we were at guys prof Harrison mentioned a link between having a celtic background & mild thalassaemia. Does anyone have this? We had genetic tests...

Hi, When we were at guys prof Harrison mentioned a link between having a celtic...

Vicky_b

•6 years ago

28 Replies

Delaying treatment

Good morning everyone. My doctor wanted me to start on Pegasys because he considered me high risk. My platelets are in the 800s and I have an unknown MPL...

Good morning everyone. My doctor wanted me to start on Pegasys because he consid...

annem22

•6 years ago

40 Replies

Hydroxycarbamide - why the need to wash hands?

I'm sure I'm not the only one to wonder about this, but why do we need to wear gloves or wash hands after handling hydroxy? It seem illogical that it's safe to...

I'm sure I'm not the only one to wonder about this, but why do we need to wear g...

Ovingite

•6 years ago

11 Replies

Jst diagnosed with et

Hello im franky 41 from newzealand. Iv just been diagnosed 2weeks ago my platelets are at 1180 im on aspirin for now and im waiting for the specialist to see...

Hello im franky 41 from newzealand. Iv just been diagnosed 2weeks ago my platele...

Frankydafish

•6 years ago

21 Replies

Just diagnosed with et

Hi there im a kiwi who jst 2 weeks ago got diagnosed with et still got to see the specialist yet but its kinda sceary not knowing the full details. I know im...

Hi there im a kiwi who jst 2 weeks ago got diagnosed with et still got to see th...

Frankydafish

•6 years ago

4 Replies

Whats wrong with me???

I was told today that my BMB results showed no sign of any MPN whatsoever! I was told to keep taking the aspirin and come back in three months! I'm so...

I was told today that my BMB results showed no sign of any MPN whatsoever! I was...

Sarahjane100

•6 years ago

21 Replies

Worried Mardihel

Thank you for all your lovely replies to my post, so grateful to hear other experiences etc, and I shall drink lots of water, eat healthily, and carry on with...

Thank you for all your lovely replies to my post, so grateful to hear other expe...

Mardihel

•6 years ago

2 Replies

Oh the NHS

Most of the time I think our NHS is wonderful but every now and again I get VERY frustrated. My haematologist started the idea of beginning the pacritinib...

Most of the time I think our NHS is wonderful but every now and again I get VERY...

beetle

•6 years ago

11 Replies

Results not so good

Had my Haemo appointment this morning. My platelets have been coming down and 2 months ago were down to 707 so was hoping for good things today. Sadly they...

Had my Haemo appointment this morning. My platelets have been coming down and 2 ...

Graham7694

•6 years ago

9 Replies

Platelet count

Hi everybody hope you are all keeping well. It's been a while since I have posted. Just a quick question I have recently got access to my medical records so I...

Hi everybody hope you are all keeping well. It's been a while since I have poste...

Nettie22

•6 years ago

12 Replies

MPN

I seemed to have been logged out of this forum for some reason.

MoNut

•6 years ago

1 Reply

Anyone from Louisiana

I need help. I need to find a MPN specialist or a doctor that knows about PV. My doctor is an idiot. Also, I need a doctor that accepts Medicaid. I’m 31 years...

I need help. I need to find a MPN specialist or a doctor that knows about PV. My...

Cambrook

•6 years ago

2 Replies

Suspected bone pain in 31 year old male.

Help. My doctor doesn’t think the pain in my hip and down my upper legs is cancer related. I was diagnosed with PV earlier this year. I’ve been having it for...

Help. My doctor doesn’t think the pain in my hip and down my upper legs is cance...

Cambrook

•6 years ago

4 Replies

Red cell mass test

I have to have a red cell mass test in a few weeks & wondered if anyone had experience of this & could tell me more about it. Thankyou

I have to have a red cell mass test in a few weeks & wondered if anyone had expe...

Vicky_b

•6 years ago

12 Replies

Fatigue syndrome ?

I am new to this site. I can't get a straight answer from any of my doctors re: fatigue syndrome. I think I got it. Can one be tested for this? I live in...

I am new to this site. I can't get a straight answer from any of my doctors re:...

poverello

•6 years ago

14 Replies

Interesting reading

A very interesting article from Bloodwise that is definitely worth a read.. https://bloodwise.org.uk/blog/how-mpns-disrupt-blood-stem-cells Best wishes to...

A very interesting article from Bloodwise that is definitely worth a read.. htt...

Betsywest

•6 years ago

9 Replies

Essential Thrombocythemia

Hi just joined, I was diagnosed with ET 4 weeks ago, shell shocked, had no symptoms, was found with a full blood count test. On hydroxycarbamide and aspirin....

Hi just joined, I was diagnosed with ET 4 weeks ago, shell shocked, had no symp...

Mardihel

•6 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2018

Six months on Pegasys

Login details

Medication question

Here comes a rant!

Mr Smaug! MPN Therapy!

Does anyone else feel like this?

Greeting

Make People Notice in September, blood cancer awareness month

JAK2 Negitive

Hydroxy question

Childrens flu precaution

Manchester forum today!

MPN's anyone else have a raised red cell volume ?

Celtic background & thalassaemia

Delaying treatment

Hydroxycarbamide - why the need to wash hands?

Jst diagnosed with et

Just diagnosed with et

Whats wrong with me???

Worried Mardihel

Oh the NHS

Results not so good

Platelet count

MPN

Anyone from Louisiana

Suspected bone pain in 31 year old male.

Red cell mass test

Fatigue syndrome ?

Interesting reading

Essential Thrombocythemia

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