Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for September 2017

Fundraising

Hi I am organising a fundraising event in November. Is there a fundraising pack available I.e. Info on MPNs to so that I can back the charity up. Thanks

Hi I am organising a fundraising event in November. Is there a fundraising pack...

suzanneh

•7 years ago

5 Replies

Break from Pegasys

Interesting consultation today. After an 8 week break from Pegasys my platelets have only increased from 298 to 366 and reassuringly my other counts have all...

Interesting consultation today. After an 8 week break from Pegasys my platelets...

AndyT

•7 years ago

16 Replies

Ruxalitinib

Husband taking 30 mg Ruxalitinib daily for PV and JAX 2 positive. Going along OK but he would now Like to sort His knee out and have a Steroid injection and...

Husband taking 30 mg Ruxalitinib daily for PV and JAX 2 positive. Going along OK...

Harley22

•7 years ago

7 Replies

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LDN ?

Is anyone taking or looked into LDN ( low dose naltrexone) ? It helps with Cancers and inflammation as well as auto-immune. My hemeatologist said it might...

Is anyone taking or looked into LDN ( low dose naltrexone) ? It helps with Canc...

DH65

•7 years ago

6 Replies

prescription charges

Hi, I wonder if anyone can help me, I have a few medical conditions ET being one of them, but I'm also on medication for other conditions. I currently have a...

Hi, I wonder if anyone can help me, I have a few medical conditions ET being one...

dgk70

•7 years ago

10 Replies

MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017

Any updates? We are booked to go.

shiftzz

•7 years ago

3 Replies

Further diagnosis and treatment process of polycythemia Vera after confirming JAK mutation negative, bone marrow aspiration & biopsy normal

Hello I am PV patient. I have been confirmed JAK mutation to be negative , Bone marrow aspiration & biopsy to be normal,EPO slightly lower than normal range. I...

Hello I am PV patient. I have been confirmed JAK mutation to be negative , Bone ...

chsurchand

•7 years ago

1 Reply

Bone pain in foot

I suffer from severe pain in my left foot that comes and goes. The bones in the foot will hurt so much that I can only get around with a walker. A few hours...

I suffer from severe pain in my left foot that comes and goes. The bones in th...

Jerrymohler

•7 years ago

4 Replies

Critical illness for ET

Hello I was diagnosed with ET approx 11 years ago. It has been stable which is good because I was classed as being very young ( approx 35 years old) at the...

Hello I was diagnosed with ET approx 11 years ago. It has been stable which is g...

Dora1971

•7 years ago

31 Replies

Norco (Hydrocodone/Acetominophen 10/325)

Please share your experiences with Norco for pain. I have other issues that prohibit the use of NSAIDs.

Please share your experiences with Norco for pain. I have other issues that pro...

Jerrymohler

•7 years ago

2 Replies

my life

Hi everybody, I'm Darren and I'm 47 years old. I was diagnosed with ET about six months ago. I am currently on 2 x 500mg hydroxycarbamide and 75mg of aspirin...

Hi everybody, I'm Darren and I'm 47 years old. I was diagnosed with ET about si...

dgk70

•7 years ago

6 Replies

Working with fatigue and brain fog=PV

Hello all! I'm looking for your opinions and experience with this. I work as a math interventionist at our local elementary school. Several other duties are...

Hello all! I'm looking for your opinions and experience with this. I work as a m...

BeckyM4

•7 years ago

7 Replies

Flu jab

Does anyone know whether this year's flu jab is ok to have with our conditions/medications?

Does anyone know whether this year's flu jab is ok to have with our conditions/m...

nivana

•7 years ago

10 Replies

Red cell is the clincher

Hello everyone! Now I'm at the end of the trail of the red cell! I have very low epo. Tomorrow I have the red cell mass test to see if I'm indeed...

Hello everyone! Now I'm at the end of the trail of the red cell! I have very ...

Jennyfluff

•7 years ago

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Low EPO neg jak2

Hello everyone! I have a low EPO. But neg JAK2. Any ideas? I'm still having the red cell mass tomorrow. As far as I understand low epo means suppression of...

Hello everyone! I have a low EPO. But neg JAK2. Any ideas? I'm still having the...

Jennyfluff

•7 years ago

2 Replies

Update to Specialist 1st visit

Hi everyone, Thank you for the support and information shared to my original post. As promised, I’m sharing what was explained to me by my referring...

Hi everyone, Thank you for the support and information shared to my original pos...

Cmg5935

•7 years ago

23 Replies

Myleofibrosis and acute myeloid leukaemia

I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net...

I am 47 and have no family able to give me bone marrow for a transplant, has any...

Paul278mc

•7 years ago

7 Replies

All about me and my Myelofibrosis

Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET in 2010. I questioned the diagnosis when it did not appear to follow the WHO...

Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET...

PeterNB

•7 years ago

16 Replies

Curcumin

Hi all I know there's been quite a lot of discussion on here recently regarding Curcumin and I'm considering taking it myself. I was just wondering if those...

Hi all I know there's been quite a lot of discussion on here recently regarding ...

PT99

•7 years ago

17 Replies

Specialist - 1st visit

Hi Everyone, You were all so kind with support when I had posted that I was anxious about my first visit to the specialist, and I wanted to update you on how...

Hi Everyone, You were all so kind with support when I had posted that I was anx...

Cmg5935

•7 years ago

13 Replies

More tests

Hello everyone, I am now to have red cell mass and plasma volume testing on Tuesday to try to conclude the dx. I don't know why yet. I'm surmising either...

Hello everyone, I am now to have red cell mass and plasma volume testing on Tu...

Jennyfluff

•7 years ago

15 Replies

Regular Blood Tests when Taking Hydroxy

I'm very new to taking Hydroxy so I think I might be on here asking quite a few questions. Everyone is so helpful in sharing their experiences and...

I'm very new to taking Hydroxy so I think I might be on here asking quite a few ...

Connie46

•7 years ago

11 Replies

I'm new to this

How wonderful to find this community! I'm 55, in good health but recently started to feel fatigued frequently, have tingling in my feet, and lightheadedness....

How wonderful to find this community! I'm 55, in good health but recently star...

MaryELWoods

•7 years ago

4 Replies

Sex with pv

Hi everyone this is my first post and I hope I'm not being forward but can anyone advise me on the situation re sex with pv. I have just started on...

Hi everyone this is my first post and I hope I'm not being forward but can anyon...

Sallyrob

•7 years ago

3 Replies

Hydroxycarbamide and Flu Vaccine

Hi everyone, I have just started taking Hydroxycarbamide and am into the sixth week (500mg three times a week) of treatment. I have been told that I can have...

Hi everyone, I have just started taking Hydroxycarbamide and am into the sixth w...

Connie46

•7 years ago

24 Replies

ET and tiredness

I just got diagnosed with ET a month ago...went to the doctor because I felt so tired. I'm encouraged to hear that for most of you this is your experience and...

I just got diagnosed with ET a month ago...went to the doctor because I felt so ...

MaryELWoods

•7 years ago

8 Replies

Help

Hello all! I need to vent........I live in Las Vegas, NV and medical here is the worse I've ever seen. I have PV diagnosed about 5 years ago. I also have...

Hello all! I need to vent........I live in Las Vegas, NV and medical here is th...

Coco1965

•7 years ago

9 Replies

Goats milk kefir

Hi, I am asking on behalf of my husband who has ET and is on hydroxycarbomide. I was looking at the health benefits of kefir made with goats milk and it seems...

Hi, I am asking on behalf of my husband who has ET and is on hydroxycarbomide. ...

Jen_B

•7 years ago

4 Replies

Back to square One.

Well back to square one, can't go out by myself. Just don't like being around people. I think they are judging me in some way or another. Been of work for 3...

Well back to square one, can't go out by myself. Just don't like being around p...

sjdard

•7 years ago

11 Replies

indigestion, back ache and sleepless nights

Hi All, Every few weeks I have a bad episode with indigestion. This leads to upper back ache and ultimately a sleepless night. I'm on Lansoprazole and even...

Hi All, Every few weeks I have a bad episode with indigestion. This leads to upp...

MarkD6701

•7 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2017

Fundraising

Break from Pegasys

Ruxalitinib

LDN ?

prescription charges

MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017

Further diagnosis and treatment process of polycythemia Vera after confirming JAK mutation negative, bone marrow aspiration & biopsy normal

Bone pain in foot

Critical illness for ET

Norco (Hydrocodone/Acetominophen 10/325)

my life

Working with fatigue and brain fog=PV

Flu jab

Red cell is the clincher

Low EPO neg jak2

Update to Specialist 1st visit

Myleofibrosis and acute myeloid leukaemia

All about me and my Myelofibrosis

Curcumin

Specialist - 1st visit

More tests

Regular Blood Tests when Taking Hydroxy

I'm new to this

Sex with pv

Hydroxycarbamide and Flu Vaccine

ET and tiredness

Help

Goats milk kefir

Back to square One.

indigestion, back ache and sleepless nights

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