Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2014

Itching with et

Does any body suffer with itching who taking hydra a d asprin

chrissie1959

•10 years ago

16 Replies

Does anyone else have bleeding with anagrelide?

I have had PV diagnosed for some 7 years now. Late last year i came off the Fedratinib trial and was placed back on Anagrelide. My current dose of 4 mg per day...

I have had PV diagnosed for some 7 years now. Late last year i came off the Fedr...

hackett

•10 years ago

6 Replies

London Forum

Has a date been fixed yet for this year's London Forum? Selkie

selkie

•10 years ago

1 Reply

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Emotional times

Hi All I've been diagnosed PV for around 8 years now and had the emotional ups and downs you can expect with this, but no one can tell you everything. Last...

Hi All I've been diagnosed PV for around 8 years now and had the emotional ups a...

Michael56

•10 years ago

21 Replies

the problem with the eyes?

Hello I used eye drops (for children)-application to the nose and eyes for three weeks. I have a question that you will have reactions to this drug- if you...

Hello I used eye drops (for children)-application to the nose and eyes for thre...

ida777

•10 years ago

4 Replies

I know how you feel Louise ,last week I was trying to tell everyone about our chat day ,it disappeared so many times is that an improvement

This chat site was so useful as you say ,now it's frustrating to write and it just seems to disappear ,as it has now ,,

This chat site was so useful as you say ,now it's frustrating to write and it ju...

Twinkly

•10 years ago

3 Replies

Does anyone else have trouble with replying to posts?

Does anyone else have trouble with replying to posts? I have just written a long reply to Mel / Harley Davidson re taking hydroxicarbamide which I hoped would...

Does anyone else have trouble with replying to posts? I have just written a long...

LouisePRV

Volunteer•10 years ago

16 Replies

I need your help!

Hi all.Please advise me with your experience. After 9 years of just venesections and aspirin to treat my PV, I am told it's time to start treatment to lower my...

Hi all.Please advise me with your experience. After 9 years of just venesections...

harleydavidson

•10 years ago

24 Replies

Dealing with sickle cell anaemia.

ever since I knew I had sickle cell, I've been taking much of folic acid. How does the folic acid help sustain me?

ever since I knew I had sickle cell, I've been taking much of folic acid. How do...

Indahi-keith

•10 years ago

1 Reply

Thanks for coming to Cambridge ,tea and chat ,day ,I enjoyed meeting up .hope you did too ,shall we do it again ?? I leave it to you !

If not Cambridge ,let me know ! If we try we can become good friends who support each other ,I think the effort is well worth it !! Twinkly. Xx

If not Cambridge ,let me know ! If we try we can become good friends who suppor...

Twinkly

•10 years ago

9 Replies

Primary mylofibrosis

Hi everyone my husband was diagnosed 18 months ago with P M F. At the start his platelets were 148 and enlarged spleen 19 cm was put on ruxolitini 30mg...

Hi everyone my husband was diagnosed 18 months ago with P M F. At the start hi...

Kisses

•10 years ago

2 Replies

Problems with damaged, dry, flaky nails - any solutions?

Do you have any hints and tips for managing damaged nails that are catching and snagging on tights and delicate material? The lady who has this problem has...

Do you have any hints and tips for managing damaged nails that are catching and ...

Mazcd

Partner•10 years ago

8 Replies

Forgotton medicine

Hi all, Just arrived in Barcelona and realised forgotton my hydroxy and aspirin, aspirin no prob as can buy that here. Platelets are under control at just...

Hi all, Just arrived in Barcelona and realised forgotton my hydroxy and aspirin...

stevenjust

•10 years ago

6 Replies

Monday morning ,here to remind you all of our open invitation on Wednesday 20 th of August ,to come to scotsdales garden centre .to meet up

It's a good time of the year to get together for tea / coffee ,to chat unwind and relax.maz has put the link for you to find the full address ,we will be there...

It's a good time of the year to get together for tea / coffee ,to chat unwind an...

Twinkly

•10 years ago

14 Replies

MPN Challenge 2014 Award – Dr. Angela Fleischman and Dr. Rick Van Etten

A key role for lymphoid cells in the pathology of myeloproliferative neoplasm, more details here on PV Reporter -...

A key role for lymphoid cells in the pathology of myeloproliferative neoplasm, m...

PVReporter

•10 years ago

Be the first to reply

Tips on How to Treat your Chronically Ill Friend

Hi Guys - Here is the most popular article on PV Reporter ever for (1) day - Tips on How to Treat your Chronically Ill Friend, written by Mary...

Hi Guys - Here is the most popular article on PV Reporter ever for (1) day - Tip...

PVReporter

•10 years ago

1 Reply

Painful feet

Hi everyone just wondered if anyone else gets painful feet achy and burn on a night. I have ET but also have cervical spondylosis so I am trying to work out...

Hi everyone just wondered if anyone else gets painful feet achy and burn on a ni...

avondale2009

•10 years ago

8 Replies

Question about mutations

Hi everyone, Just checking some info to see if i am correct. My daughter has ET, she is now seven years old she was diagnosed at four. She is JAK2 positive,...

Hi everyone, Just checking some info to see if i am correct. My daughter has ET,...

kentuckyrain

•10 years ago

7 Replies

Don't forget on the 20 th August ,Wednesday we invite you to come to Cambridge ,for a tea and chat day.at scotsdales garden centre.

Everybody is welcome to come on over ,we will be there from 11 o'clock .friends and family welcome ,to come .unwind.relax.just enjoy an informal day together...

Everybody is welcome to come on over ,we will be there from 11 o'clock .friends ...

Twinkly

•10 years ago

Be the first to reply

The poor partners....

Rubbish couple of days...... I feel so completely alone at times, I'm in a relatively new relationship 8 months or so, we were friends before for a long time,...

Rubbish couple of days...... I feel so completely alone at times, I'm in a relat...

Chelle_

•10 years ago

6 Replies

How big is too big?

Recent ultra sound showed my sleep has grown 1.2cm in 9 months it's now, 19.2. The Hydroxy doesn't seem to be making it smaller.....how big does it have to get...

Recent ultra sound showed my sleep has grown 1.2cm in 9 months it's now, 19.2. T...

Chelle_

•10 years ago

9 Replies

Insurance issue

Once spent half a flight from USA to UK treating someone who was ill and refused diversion to Iceland. Anyone know the insurance position say you were going to...

Once spent half a flight from USA to UK treating someone who was ill and refused...

skodaguy

•10 years ago

5 Replies

Breathing Problems

Since very hot and humid weather,I am having breathing problems,I have P V,meds Hydrea ,Isoptine,Asprin have inhalers for asthma which do not help,previously...

Since very hot and humid weather,I am having breathing problems,I have P V,meds ...

Inca

•10 years ago

17 Replies

Ruxolitinib filed to FDA for PV

I noticed that ruxolitinib has been filed to the FDA for treatment for PV. Looks like they will publish results december time. Results appear impressive with...

I noticed that ruxolitinib has been filed to the FDA for treatment for PV. Looks...

Paul42

•10 years ago

12 Replies

Extending HealthUnlocked on Patient Power

We have just added a feed from this HealthUnlocked community to our CLL Community home page at: http://www.patientpower.info/myeloproliferative-neoplasms . So...

We have just added a feed from this HealthUnlocked community to our CLL Communit...

andrewschorr

•10 years ago

1 Reply

Help us all understand the community better

Greetings from sunny Seattle. My group, Patient Power, launched our "summer survey" the other day to help all of us better understand the needs of patients and...

Greetings from sunny Seattle. My group, Patient Power, launched our "summer surv...

andrewschorr

•10 years ago

1 Reply

Vertigo

I have been taking 500 mg of hydrea. I now have vertigo. Has anyone had this happen to them? Could it be from the meds?

I have been taking 500 mg of hydrea. I now have vertigo. Has anyone had this hap...

spikesnana

•10 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2014

Itching with et

Does anyone else have bleeding with anagrelide?

London Forum

Emotional times

the problem with the eyes?

I know how you feel Louise ,last week I was trying to tell everyone about our chat day ,it disappeared so many times is that an improvement

Does anyone else have trouble with replying to posts?

I need your help!

Dealing with sickle cell anaemia.

Thanks for coming to Cambridge ,tea and chat ,day ,I enjoyed meeting up .hope you did too ,shall we do it again ?? I leave it to you !

Primary mylofibrosis

Problems with damaged, dry, flaky nails - any solutions?

Forgotton medicine

Monday morning ,here to remind you all of our open invitation on Wednesday 20 th of August ,to come to scotsdales garden centre .to meet up

MPN Challenge 2014 Award – Dr. Angela Fleischman and Dr. Rick Van Etten

Tips on How to Treat your Chronically Ill Friend

Painful feet

Question about mutations

Don't forget on the 20 th August ,Wednesday we invite you to come to Cambridge ,for a tea and chat day.at scotsdales garden centre.

The poor partners....

How big is too big?

Insurance issue

Breathing Problems

Ruxolitinib filed to FDA for PV

Extending HealthUnlocked on Patient Power

Help us all understand the community better

Vertigo

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