Posts - MPN Voice | HealthUnlocked

MPN Voice

10,432 members • 14,377 posts

All posts for March 2018

Hydrea

I've been taking hydrea for 4 years. Never had high platlets only a high white count and high eosonphile. Why am I taking hydrea if my platelets are not high

I've been taking hydrea for 4 years. Never had high platlets only a high white c...

spikesnana

•6 years ago

4 Replies

Does hydroxycarbomide have effect on partner

I have asked this question on other forums and it's something that j would really like a definitive answer to. My husband takes hydroxycarbomide 7 days a week...

I have asked this question on other forums and it's something that j would reall...

scousesbird

•6 years ago

6 Replies

Exercise and Et

Does exercise lower or raise platelets. And if it raises them how many days before blood work should I avoid working out

Does exercise lower or raise platelets. And if it raises them how many days befo...

Petsch

•6 years ago

7 Replies

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More News from the Battle Zone, and a gift from the kiln!

Happy to report that the jolly Hydroxyurea ordnance that I bravely swallow after lunch every day is doing the trick. I am now 4 weeks into the battle and the...

Happy to report that the jolly Hydroxyurea ordnance that I bravely swallow after...

stillkicking

•6 years ago

16 Replies

Who leads the MPN research at the Royal Surrey in Guildford?

Hi. I might be changing my local hospital to the Royal Surrey County Hospital in Guildford. I can see from their website that are involved in research on...

Hi. I might be changing my local hospital to the Royal Surrey County Hospital ...

Rachelthepotter

•6 years ago

17 Replies

Transplant or not?! I’m being offered a choice at this time. Tough decision

I have myleofibrosis very high platelets high white count low hemoglobin... blasts in my blood have increased to 5% my spleen is normal. Off all meds and no...

I have myleofibrosis very high platelets high white count low hemoglobin... blas...

Murry33

•6 years ago

16 Replies

Et

Want to know if I can be weaned off of hydroxy periodically just to give my body a break and of course be watched with blood test

Want to know if I can be weaned off of hydroxy periodically just to give my body...

Petsch

•6 years ago

3 Replies

Atrial fibrillation

Hello, Has anyone developed atrial fibrillation that has been attributed to either ET or the medication ? I’ve had a couple of episodes and with the latest...

Hello, Has anyone developed atrial fibrillation that has been attributed to eit...

Juliet46

•6 years ago

8 Replies

Easter wishes

Hi all wishing everyone a happy and peaceful Easter. go easy on the chocolate !! 😋

Hi all wishing everyone a happy and peaceful Easter. go easy on the chocolate...

catwoman2015

•6 years ago

7 Replies

Community Guidelines

We would like to draw your attention to the community guidelines (below) for our forum on HealthUnlocked, THESE GUIDELINES ARE THOSE OF HEALTHUNLOCKED AND...

We would like to draw your attention to the community guidelines (below) for ou...

Mazcd

Partner•6 years ago

21 Replies

Can aspirin effect your menstrual cycle?

Hi ... I am a 44 yr old female from Australia. I’ve just been diagnosed with ET after a strange episode of back pain. My platelets have been up at 1000 for...

Hi ... I am a 44 yr old female from Australia. I’ve just been diagnosed with ET ...

MazCorcoran

•6 years ago

6 Replies

Hydroxy withdrawal

Hello all, I have had ET for around 7 years and have been on Hydroxy since the start, my dose has been increased over the years to get my platelets under...

Hello all, I have had ET for around 7 years and have been on Hydroxy since the ...

stevenjust

•6 years ago

3 Replies

New to Hydroxycarmide

Hi all I’m 46 and have PV but also raised platelets diagnosed in 2016. Until now I have been having aspirin and regular venesections but have now been...

Hi all I’m 46 and have PV but also raised platelets diagnosed in 2016. Until now...

Lezza1971

•6 years ago

16 Replies

Interferon and itchy toes

Hi all, this might be a daft question but I'll ask it anyway :) I've just started interferon (pegasys) and I have horribly itchy middle toes on both feet. I...

Hi all, this might be a daft question but I'll ask it anyway :) I've just starte...

hansyhand

•6 years ago

6 Replies

New here and newly diagnosed (ET)

Hi, Just wanted to say Hi and what a great find this forum is. I am 36 and have just been diagnosed with JAK2+ ET, all stemming from a routine blood test...

Hi, Just wanted to say Hi and what a great find this forum is. I am 36 and have ...

Hidden

•6 years ago

9 Replies

Interferon vs pegInterferon

Hi all Can I please ask if anyone has moved away from normal to pegInterferon as a result of side effects and in particular, after feeling depressed? If so,...

Hi all Can I please ask if anyone has moved away from normal to pegInterferon as...

PT99

•6 years ago

6 Replies

ET and travel insurance (Australia)

Hello, I am new to this forum and am very pleased to have found it to talk with others with similar issues. I was diagnosed with ET 3 years ago when i was 44...

Hello, I am new to this forum and am very pleased to have found it to talk with ...

Gabbo

•6 years ago

10 Replies

Sent to Hospital with possible TIA

Hi my MPN Family I have had several "episodes" of sudden, overwhelming tiredness followed by slurring speech. I have often had to excuse my slow, deliberate...

Hi my MPN Family I have had several "episodes" of sudden, overwhelming tirednes...

jillydabrat

•6 years ago

35 Replies

GYM and ET

Good Afternoon All, I have not posted in a while I'm ET JAK2 Positive was diagnosed in 2016 following a Stroke, ( have not worked Since) but I am fed up and...

Good Afternoon All, I have not posted in a while I'm ET JAK2 Positive was diagno...

tina6

•6 years ago

23 Replies

Multivitamins

Hello Everybody can anyone recommend a good multivitamin tablet that would be suitable for an ET patient. Not sure which vitamins are ok and which should be...

Hello Everybody can anyone recommend a good multivitamin tablet that would be su...

Juliet46

•6 years ago

10 Replies

Marathon Des Sables April 6th -16th 2018

Apologies The correct page is www.justgiving.com/fundraising/emily-brosnanmds2018 Kevin

Apologies The correct page is www.justgiving.com/fundraising/emily-brosnanmds2...

Kevbroz

•6 years ago

6 Replies

Marathon Des Sables Morocco 6th -16th April 2018

Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who...

Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days...

Kevbroz

•6 years ago

6 Replies

Lilly,1958

Hi, I have ET over 20 years and now PV with hight hct 49 ,I'm on venosection monthly ,but now I will be start 2 times monthly and I start with Roteferon A...

Hi, I have ET over 20 years and now PV with hight hct 49 ,I'm on venosection mo...

Lilly1958

•6 years ago

3 Replies

Great group of videos

From the recent St Antonio Patients Conference http://mpnadvocacy.com/2018/03/video-presentations-san-antonio-patient-caregiver-program-2-24-18 Re the Jason...

From the recent St Antonio Patients Conference http://mpnadvocacy.com/2018/03/vi...

Paul123456

•6 years ago

11 Replies

Newly diagnosed as Polycythaemia, possibly relative.

Hi, Does anyone know if this condition causes tinnitus and increasing deafness? Each attack of a severe bout of tinnitus would cause my hearing to drop and...

Hi, Does anyone know if this condition causes tinnitus and increasing deafness? ...

janeandsamsmith

•6 years ago

3 Replies

ET and Myelofibrosis

Is there any others out there with both of the above? I just wanted to compare note Sue

Is there any others out there with both of the above? I just wanted to compare n...

Coradelphine

•6 years ago

11 Replies

Useful Presentation if you have PV

From 2017. Discusses progression risk and treatment options, including possible impact of Interferon on progression. Interestingly, there is some evidence to...

From 2017. Discusses progression risk and treatment options, including possible ...

Paul123456

•6 years ago

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New system

Hi everyone, I saw my haem on Tuesday, and was surprised when she told me I have PV and not ET as I previously thought, stupid of me not to verify this with...

Hi everyone, I saw my haem on Tuesday, and was surprised when she told me I have...

AngiP

•6 years ago

16 Replies

Vertigo / dizziness and ET

I’ve recently been diagnosed with ET (triple negative on the gene mutations). I’ve been suffering from fatigue and an almost permanent dizzy sensation,that is...

I’ve recently been diagnosed with ET (triple negative on the gene mutations). I’...

TJER78

•6 years ago

19 Replies

Hydrea leading to fingernail problems

I have ET and have been taking hydroxicarbomide for at least five years and recently have noticed delamination and loss of strength of fingernails, so much so...

I have ET and have been taking hydroxicarbomide for at least five years and rece...

ashby7763

•6 years ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2018

Hydrea

Does hydroxycarbomide have effect on partner

Exercise and Et

More News from the Battle Zone, and a gift from the kiln!

Who leads the MPN research at the Royal Surrey in Guildford?

Transplant or not?! I’m being offered a choice at this time. Tough decision

Et

Atrial fibrillation

Easter wishes

Community Guidelines

Can aspirin effect your menstrual cycle?

Hydroxy withdrawal

New to Hydroxycarmide

Interferon and itchy toes

New here and newly diagnosed (ET)

Interferon vs pegInterferon

ET and travel insurance (Australia)

Sent to Hospital with possible TIA

GYM and ET

Multivitamins

Marathon Des Sables April 6th -16th 2018

Marathon Des Sables Morocco 6th -16th April 2018

Lilly,1958

Great group of videos

Newly diagnosed as Polycythaemia, possibly relative.

ET and Myelofibrosis

Useful Presentation if you have PV

New system

Vertigo / dizziness and ET

Hydrea leading to fingernail problems

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