Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2018

Jak2 positive and MPN

My name is Catherine 26 years young. Diagnosed with Jak2 positive, mpn, ET. I was diagnosed after having my son premature at 29 weeks. I had a placenta...

My name is Catherine 26 years young. Diagnosed with Jak2 positive, mpn, ET. I w...

Cathy426

•6 years ago

8 Replies

Waiting on Bone Marrow Biopsy Scared...

So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my...

So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak ...

pgleason210

•6 years ago

6 Replies

Misdiagnosed?

Has anyone been told by your primary care doctor that it looks like from all your blood work (done 3 times) that you possibly have PV and they would like for...

Has anyone been told by your primary care doctor that it looks like from all you...

osuguy45

•6 years ago

2 Replies

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PV. jak2positive

I am on 18 Hydroxycarbomide a week I am finding I can't do my daily tasks i am normally quite active but as my medication as increased I am struggling just...

I am on 18 Hydroxycarbomide a week I am finding I can't do my daily tasks i am n...

Eveg50

•6 years ago

12 Replies

Cortisone, local anaesthetic and PV

Hi Guys, I received cortisone jabs with local anaesthetic last Thursday and Friday into my wrist and hip to combat inflammation due to osteoarthritis. I...

Hi Guys, I received cortisone jabs with local anaesthetic last Thursday and Fri...

Aime

•6 years ago

5 Replies

Mutated blood

Saw my consultant today and blood is artificially still within normal range wopeeee xx 🤗😊🤗😊🤗

Saw my consultant today and blood is artificially still within normal range wop...

Lainy1

•6 years ago

11 Replies

Promethazine and itching

Anyone use it?

shiftzz

•6 years ago

1 Reply

Uplifting Webcast reviewing Ash Dec 2017 advances

https://www.youtube.com/channel/UCpO6sdqmcfion86WEpNleMw?view_as=public

Paul123456

•6 years ago

1 Reply

Flu jab - recommended or not

Hi all, I’m going to visit my mother who is undergoing cancer treatment, and she suggested that i’d take a flu jab before I come. I remember seeing posters...

Hi all, I’m going to visit my mother who is undergoing cancer treatment, and she...

Moina-vdh

•6 years ago

13 Replies

Feel like I'm going to pass out

For the passed month I have been feeling really dizzy so I been making sure to drink lots of water. Also here and there I have been feeling like I'm going to...

For the passed month I have been feeling really dizzy so I been making sure to d...

Nettie22

•6 years ago

8 Replies

My Granddaughter has arrived 💗

We are on a high shes so perfect in every way 💕 A baby sister for Carter .💙 6-lb -6oz Reina Evelyn Heads , ( Evelyn being my late Mother -in- laws name)x A...

We are on a high shes so perfect in every way 💕 A baby sister for Carter .💙 6-...

Phelpsy

•6 years ago

28 Replies

Weight loss.

Hi I have had a positive diagnosis of et since September. I have a weight check since August. It would appear that I have had a decrease of 8lbs. Should I...

Hi I have had a positive diagnosis of et since September. I have a weight check ...

Roger41

•6 years ago

6 Replies

No happy medium. Advice needed

Morning all I had my 8 weekly appointment yesterday and received good and not so good news. My HCT was at a fantastic 0.41 so no venesection required, which...

Morning all I had my 8 weekly appointment yesterday and received good and not so...

Kari1961

•6 years ago

10 Replies

Tingling Head

Hi I’ve been taking Hydrea for just on 6 months now and have just started getting a weird crawling feeling in my head, it’s driving me crazy!! Does anyone...

Hi I’ve been taking Hydrea for just on 6 months now and have just started getti...

Panda2017

•6 years ago

4 Replies

HI guys its me again

I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a...

I am looking for people that suffer an MPN from Glasgow central belt Fife and Hi...

Scottishterrier

•6 years ago

3 Replies

Praise to the unsung hero's

Can I just take a minute to say a big thank you to the husbands/wives/partners of everyone one on this site with an MPN. If your spouse or partner is like...

Can I just take a minute to say a big thank you to the husbands/wives/partners o...

jillydabrat

•6 years ago

7 Replies

Turmeric Treatment on This Morning, this morning

Amazingly just reading Tinkerbells post on Turmeric when the woman who is in the article came on This Morning to discuss it. Very interesting.

Amazingly just reading Tinkerbells post on Turmeric when the woman who is in the...

jillydabrat

•6 years ago

7 Replies

More Pain at Night?

Anybody else suffering pain mostly, or only, at night? Anybody know why Erythromelalgia and/or MPN bone pain can be so much worse at night? I can get through...

Anybody else suffering pain mostly, or only, at night? Anybody know why Erythro...

Jerrymohler

•6 years ago

3 Replies

More on tumeric / curcumin

Following on from Tinkerbell's post yesterday, there is a fuller explanation in the Express that you can find at...

Following on from Tinkerbell's post yesterday, there is a fuller explanation in ...

Ovingite

•6 years ago

10 Replies

Should I stop the Hydroxy ?

My hubby and I have both caught the winter flu virus and I have never felt so I'll in my life. I know my immune system is suppressed because of the hydroxy so...

My hubby and I have both caught the winter flu virus and I have never felt so I'...

jillydabrat

•6 years ago

14 Replies

Anagralide versus Hydroxy.

I have spoken to my haemo. Nurse because of so many side effects. I have ET and she mentioned changing to anagralide instead of Hydroxy.and is going to talk...

I have spoken to my haemo. Nurse because of so many side effects. I have ET and...

Garden987

•6 years ago

9 Replies

Polycythemia

Is it common that it takes a while to diagnose polycythemia related health issues ?

Is it common that it takes a while to diagnose polycythemia related health issue...

Kwebb

•6 years ago

14 Replies

cnsMpn

Anyone that attends a Haematology clinic with an mpn In the Glasgow or central belt or Fife I am trying to get more attending the Clinics I have one and she is...

Anyone that attends a Haematology clinic with an mpn In the Glasgow or central b...

Scottishterrier

•6 years ago

5 Replies

Haematocrit I hate you

So platelets are now beautifully under control with hydroxy but my haematocrit keeps playing yoyo with an alltime high of .53 yesterday so back to venesections...

So platelets are now beautifully under control with hydroxy but my haematocrit k...

Belgobrit72

•6 years ago

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MPN Voice Patients’ Forum - Belfast

Saturday 3rd March 2018 10.30 am – 4.45 pm (registration from 10 am) The forum will be held in Riddel Hall, Queen’s University, 185 Stranmillis Road,...

Saturday 3rd March 2018 10.30 am – 4.45 pm (registration from 10 am) The forum...

Mazcd

Partner•6 years ago

5 Replies

Dr. J.J. Kiladjian at ASH 2017, Ropeginterferon Induces High Rates of Clinical, Hematological and Molecular Responses in PV Patients

Two Year Results from the First Prospective Randomized Controlled Trial -...

PVReporter

•6 years ago

2 Replies

Lyrica (pregabalin), Trepiline

Hi all, I have ET Jak2+ and am on Pegasys 90 mcg every 3 weeks. Peg is working well, although rather harsh on my liver. What I would like to know is: anyone...

Hi all, I have ET Jak2+ and am on Pegasys 90 mcg every 3 weeks. Peg is working w...

Lab-Rat

•6 years ago

9 Replies

MPN Voice Nottingham Support Group meetings 2018

The first meeting for 2018 will take place on Wednesday 17 January, 6 pm – 7.30 pm Meetings are held on the 3rd Wednesday of each month, except December, you...

The first meeting for 2018 will take place on Wednesday 17 January, 6 pm – 7.30 ...

Mazcd

Partner•6 years ago

2 Replies

Polycythemia Vera

Hello,I'm new to the group and I'm so glad I found this site. I was diagnosed with pv 6 months ago. I was put on Hydroxyurea and did fine until about a month...

Hello,I'm new to the group and I'm so glad I found this site. I was diagnosed w...

charlene63

•6 years ago

8 Replies

Too Much Alcohol Celebrating 2018

I'm definitely not recommending it, but did anyone get carried away with Christmas or New Years Celebration and get a bit wasted? Since I was diagnosed with...

I'm definitely not recommending it, but did anyone get carried away with Christm...

Raphael_UK

•6 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2018

Jak2 positive and MPN

Waiting on Bone Marrow Biopsy Scared...

Misdiagnosed?

PV. jak2positive

Cortisone, local anaesthetic and PV

Mutated blood

Promethazine and itching

Uplifting Webcast reviewing Ash Dec 2017 advances

Flu jab - recommended or not

Feel like I'm going to pass out

My Granddaughter has arrived 💗

Weight loss.

No happy medium. Advice needed

Tingling Head

HI guys its me again

Praise to the unsung hero's

Turmeric Treatment on This Morning, this morning

More Pain at Night?

More on tumeric / curcumin

Should I stop the Hydroxy ?

Anagralide versus Hydroxy.

Polycythemia

cnsMpn

Haematocrit I hate you

MPN Voice Patients’ Forum - Belfast

Dr. J.J. Kiladjian at ASH 2017, Ropeginterferon Induces High Rates of Clinical, Hematological and Molecular Responses in PV Patients

Lyrica (pregabalin), Trepiline

MPN Voice Nottingham Support Group meetings 2018

Polycythemia Vera

Too Much Alcohol Celebrating 2018

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