Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for July 2017

Newly diagnosed and curious

Hello everyone, Had Jak2 test in March and searching for information led me to this forum. Saw consultant in middle of June and he told me I was Jak2...

Hello everyone, Had Jak2 test in March and searching for information led me to ...

lizk1993

•7 years ago

16 Replies

High Hemaglobin

Hi buddies, well, good news my E.T is almost under control. Saw my consultant today and platelets now 540 ive been taking 1gram hydroxy daily. She wants me to...

Hi buddies, well, good news my E.T is almost under control. Saw my consultant to...

Lainy1

•7 years ago

9 Replies

Ruxolitinib

I would be really grateful those of you taking Ruxolitinib could tell me the benefits and problems they've experienced as I may be offered it in a few weeks...

I would be really grateful those of you taking Ruxolitinib could tell me the ben...

Fika500

•7 years ago

36 Replies

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bladder problems

Hi everyone, Woke up yesterday not feeling 100% but just shook it off. This morning I have a really sore bladder.. I think I have a bladder infection and...

Hi everyone, Woke up yesterday not feeling 100% but just shook it off. This mor...

jillydabrat

•7 years ago

14 Replies

Hi I'm jr3093

19 years with Pv, and now I'm blessed with mf. By attending a forum I found out about this organisation, but that's what they're for.

19 years with Pv, and now I'm blessed with mf. By attending a forum I found out ...

jr3093

•7 years ago

13 Replies

After 4 weeks on Hydroxy comments and questions

I final decided to start the hydroxy. 4 weeks ago and since have had two blood tests. The dose was 2 x 500 daily. I have had a few reactions that I would like...

I final decided to start the hydroxy. 4 weeks ago and since have had two blood t...

nanmc

•7 years ago

19 Replies

Curcumin

Hi everyone. I know someone posted about curcumin not sure if they are taking it. There was an article in the Daily Mail which I hope I can attach for you all...

Hi everyone. I know someone posted about curcumin not sure if they are taking it...

eire

•7 years ago

22 Replies

Danib0923

hi Dani I have ET jak2+ since 1994 it was diagnosed by bone marrow test I pity the poor nurse whose hand I was holding it had lost its colour by end of test I...

hi Dani I have ET jak2+ since 1994 it was diagnosed by bone marrow test I pity ...

Scottishterrier

•7 years ago

1 Reply

Hydro v Interferon

PV JAK2+, been on Hydro, Aspirin and Veneseaction. Only one venesection this year. Numbers all good, yesterday Consultant suggested that I switch to...

PV JAK2+, been on Hydro, Aspirin and Veneseaction. Only one venesection this yea...

shiftzz

•7 years ago

6 Replies

Painful sores excruciating pain on my scalp. itchings started on my cheeks and open sores ate my skin woulda heel

Went to dermatologist internal medicine Dr specialist they tested me for everything, even HIV nothing . Ended up in Mexico gave me antibiotics but they over...

Went to dermatologist internal medicine Dr specialist they tested me for everyth...

Tnthmtz

•7 years ago

4 Replies

First time post

Hello, this is my first time reading a forum. I am 31yr old with ET with a cal-retic mutation. Was diagnosed last year. Started Hydrea in October, recently...

Hello, this is my first time reading a forum. I am 31yr old with ET with a cal-r...

Hidden

•7 years ago

6 Replies

Thank You!

I'm so delighted with this forum and I can't thank you enough for not only the support but the words of wisdom that help so much. I guess you're never too old...

I'm so delighted with this forum and I can't thank you enough for not only the s...

fran57paul

•7 years ago

2 Replies

chronic fatigue

I to also suffer from chronic fatigue I have ET JAK2 positive I told my consultant how I felt and she was very caring and said it would be okay to have a...

I to also suffer from chronic fatigue I have ET JAK2 positive I told my consult...

Scottishterrier

•7 years ago

Be the first to reply

Constant fatigue

Hi everyone, I'm new here and am so happy to read what others have written and I can identify with. I've always been very active. I have been diagnosed with...

Hi everyone, I'm new here and am so happy to read what others have written and I...

fran57paul

•7 years ago

14 Replies

Advice Please

This is one for Maz really but if anyone else has any comments, please feel free to post them. There are two points I need advice on, the first is regarding...

This is one for Maz really but if anyone else has any comments, please feel free...

Connie46

•7 years ago

8 Replies

Need advise

My husband was diagnosed wjth secondary pv which is caused by smoking cigs well he quit smoking and his blood count is slowly fixing its self but i want to...

My husband was diagnosed wjth secondary pv which is caused by smoking cigs well ...

Samanthaiscool

•7 years ago

1 Reply

Just about to get a transfusion to see if it helps the fatigue.

Hi Tried to post earlier but not sure it worked so this might be a repeat. I'm MF Jak2 + and ive been on ruxolitinib for nearly 3 months. Fatigue has been...

Hi Tried to post earlier but not sure it worked so this might be a repeat. I'm ...

Rachelthepotter

•7 years ago

6 Replies

Newly diagnosed

Hi, I have recently been diagnosed with ET jak 2 positive. I am taking Hydroxycarbonide 500 daily. After 3 weeks my hair has started to come out in places is...

Hi, I have recently been diagnosed with ET jak 2 positive. I am taking Hydroxyca...

Anne2751

•7 years ago

6 Replies

Curcumin

Seriously thinking of trying 'curcumin' however, some people have posted that there maybe contraindications with aspirin. Is it also a blood thinner? Maz, if...

Seriously thinking of trying 'curcumin' however, some people have posted that t...

mhos61

•7 years ago

13 Replies

Not a Jak2 mutation PV

Hi there - my dad has discovered he has PV. Coincidently so does my grandma, and her three sisters! My grandma and her sisters can't tell us what type they...

Hi there - my dad has discovered he has PV. Coincidently so does my grandma, an...

Sam000

•7 years ago

1 Reply

Keeping active with ET

Me and my grankids keep me going even on bad days they bring a smile to my face

Jbut

•7 years ago

2 Replies

HOPE FOR MANY

https://www.nytimes.com/2017/07/23/health/gene-therapy-cancer.html New innovative ways to treat cancer been developed!

https://www.nytimes.com/2017/07/23/health/gene-therapy-cancer.html New innovativ...

light

•7 years ago

2 Replies

I'm feeling a lot better... I think my platelet factory may have joined a union and have better pay and conditions!

I was a bit embarrassed by my last post as it was long and miserable, and I was tempted to see if it could be taken down again. It was an accurate reflection...

I was a bit embarrassed by my last post as it was long and miserable, and I was ...

stillkicking

•7 years ago

8 Replies

Having ET

After 3 mini strokes found out i have ET,that was 8 years ago at the age of 39,been on interferon alpha 2b since then been lucky side affects not to bad,just...

After 3 mini strokes found out i have ET,that was 8 years ago at the age of 39,b...

Jbut

•7 years ago

3 Replies

Newbie Here

I was diagnosed in April of this year; after multiple blood draws & BMB, I was diagnosed with ET. I am JAK2 + & take Plavix & HU 500 mgs 3x a week. My...

I was diagnosed in April of this year; after multiple blood draws & BMB, I was d...

EllenKay67

•7 years ago

6 Replies

Does anyone else with PV get achey thighs?

Hello - this is my first post! I was diagnosed with PV in May (aged 45) and it's great to have found this excellent forum. Just a quick query - I've been...

Hello - this is my first post! I was diagnosed with PV in May (aged 45) and it's...

Disney71

•7 years ago

2 Replies

It's a Nice Day for a White Wedding

Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant....

Hi Folks , , just a social post to prove that despite my current issues battling...

JediReject

•7 years ago

29 Replies

Vascular disturbance

Hi. Sorry to trouble you all again but would love some advice I have jak 2 + ET and am on hi 500 per day. Platelets are about 450. I was driving today and had...

Hi. Sorry to trouble you all again but would love some advice I have jak 2 + ET ...

Margo18

•7 years ago

10 Replies

Polycythemia....should I actually worry....??

I don't know whether I should worry or not...I have hb of 17.5 my RBCs are just little above normal...wbcs are fine and platelet count is not high at...

I don't know whether I should worry or not...I have hb of 17.5 my RBCs are just ...

Mnnvv

•7 years ago

8 Replies

ITCHY and bitchy for aime

hi aime I was in the same position as you were I was referred to another hospital by my Haematologist consultant when I saw the dermatologist consultant after...

hi aime I was in the same position as you were I was referred to another hospita...

Scottishterrier

•7 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2017

Newly diagnosed and curious

High Hemaglobin

Ruxolitinib

bladder problems

Hi I'm jr3093

After 4 weeks on Hydroxy comments and questions

Curcumin

Danib0923

Hydro v Interferon

Painful sores excruciating pain on my scalp. itchings started on my cheeks and open sores ate my skin woulda heel

First time post

Thank You!

chronic fatigue

Constant fatigue

Advice Please

Need advise

Just about to get a transfusion to see if it helps the fatigue.

Newly diagnosed

Curcumin

Not a Jak2 mutation PV

Keeping active with ET

HOPE FOR MANY

I'm feeling a lot better... I think my platelet factory may have joined a union and have better pay and conditions!

Having ET

Newbie Here

Does anyone else with PV get achey thighs?

It's a Nice Day for a White Wedding

Vascular disturbance

Polycythemia....should I actually worry....??

ITCHY and bitchy for aime

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