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Experiences with
Polycythaemia
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Is there an alternative to drugs for PV?
I was diagnosed with
polycythaemia
vera a couple of years ago at the age of 61 and have been on daily low dose aspirin and regular venesections since then.
I was diagnosed with
polycythaemia
vera a couple of years ago at the age of 61 and have been on daily low dose aspirin and regular venesections since then.
reliabletony
in
MPN Voice
10 years ago
Ruxolitinib - patient & family/carer questionnaires
an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland Ruxolitinib (Jakavi) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to
polycythaemia
an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland Ruxolitinib (Jakavi) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to
polycythaemia
Mazcd
MPNVoice
in
MPN Voice
10 years ago
Hi. I have recently been diagnosed with polycythaemia. My gp is quite confident that it is secondary, is it still okay for me to post here?
daisy82
in
MPN Voice
10 years ago
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Researchers discover new genetic mutation in MPN.
However, whilst the vast majority of patients with
polycythaemia
vera are positive for the JAK2 test and can be readily diagnosed, only about half of patients with essential thrombocythaemia or myelofibrosis have a positive test.
However, whilst the vast majority of patients with
polycythaemia
vera are positive for the JAK2 test and can be readily diagnosed, only about half of patients with essential thrombocythaemia or myelofibrosis have a positive test.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
The American Society of Hematology (ASH) - videos from Dr Mesa
v=G2Qjj5Tm5H0&feature=youtu.be
Polycythaemia
Vera : http://www.youtube.com/watch?v=Sr6HD1sEsYk&feature=youtu.be
v=G2Qjj5Tm5H0&feature=youtu.be
Polycythaemia
Vera : http://www.youtube.com/watch?v=Sr6HD1sEsYk&feature=youtu.be
Mazcd
MPNVoice
in
MPN Voice
11 years ago
I can't believe it I really just can't believe it!!!
I've had
polycythaemia
for several years now and today my mum got a phone call from the GP saying she has PRV !!!!!! Thats supposed to be impossible odds!! What the heck - she's a mess now because she knows what I go through.
I've had
polycythaemia
for several years now and today my mum got a phone call from the GP saying she has PRV !!!!!! Thats supposed to be impossible odds!! What the heck - she's a mess now because she knows what I go through.
Geoff_mpnfamily
in
MPN Voice
11 years ago
Sanofi discontinues clinical development of investigational JAK2 agent Fedratinib (SAR302503)
uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary myelofibrosis (including those patients previously treated with Ruxolitinib)
polycythaemia
uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary myelofibrosis (including those patients previously treated with Ruxolitinib)
polycythaemia
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Does cone shaped breast / PECK mean I have something to worry about?
P.S.. could this be the cause of secondary
polycythaemia
, 5 & half years after initial diagnosis? Thank you everyone for being so great! !! Geoff
P.S.. could this be the cause of secondary
polycythaemia
, 5 & half years after initial diagnosis? Thank you everyone for being so great! !! Geoff
Geoff_mpnfamily
in
MPN Voice
11 years ago
Bone pain with secondary polycythaemia
Hi, does anyone else with
polycythaemia
get pains in their thighs.. it feels like someone is pressing a blunt hard edge on my bones, when standing im a bit wobbly on my feet, and I feel like im going to collapse any moment, but I don't.
Hi, does anyone else with
polycythaemia
get pains in their thighs.. it feels like someone is pressing a blunt hard edge on my bones, when standing im a bit wobbly on my feet, and I feel like im going to collapse any moment, but I don't.
Geoff_mpnfamily
in
MPN Voice
11 years ago
Ankle ache
I have
Polycythaemia
Vera, being treated by venesection plus allopurinol to treat high uric acid. My feet are aching a lot, below my inner ankles, occasionally with sharp pains, noticeably more than before the allopurinol.
I have
Polycythaemia
Vera, being treated by venesection plus allopurinol to treat high uric acid. My feet are aching a lot, below my inner ankles, occasionally with sharp pains, noticeably more than before the allopurinol.
JAK2positive
in
MPN Voice
11 years ago
TRYING TO FIGURE OUT IF ITS POLYCYTHAEMIA OR PV-UPDATE 2/7/2013
why would the lab put
polycythaemia
when my results are now within the ref range ?
why would the lab put
polycythaemia
when my results are now within the ref range ?
mistymoo
in
MPN Voice
11 years ago
I had a reaction to ? Hydroxycarbamide. I am a Polycythaemia Vera patient. Where do I go from here?
I was doing well on Hydroxycarbamide after being on the treatment for 21 days. Then I developed a Blue and numb left index finger. I attended my GP Practice who tried to get me seen by the Haemotology department, They however said that I had to go to A&E. after being seen by 1) a Vascular Surgeon, 2)
I was doing well on Hydroxycarbamide after being on the treatment for 21 days. Then I developed a Blue and numb left index finger. I attended my GP Practice who tried to get me seen by the Haemotology department, They however said that I had to go to A&E. after being seen by 1) a Vascular Surgeon, 2)
AlRow
in
MPN Voice
11 years ago
Has anyone else got Polycythaemia?
I was diagnosed with
Polycythaemia
[too many red blood cells] over a year ago and have to go and have blood drained every 6 weeks.
I was diagnosed with
Polycythaemia
[too many red blood cells] over a year ago and have to go and have blood drained every 6 weeks.
WestWalesPaul
in
Lung Conditions Community Forum
11 years ago
Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE
Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to
polycythaemia
vera or essential thrombocythaemia.
Further to the NICE draft guidance not recommending Ruxolitinib (Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to
polycythaemia
vera or essential thrombocythaemia.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
MPN(D) Related Fatigue – MRF – Survey
Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and
polycythaemia
vera (PV).
Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and
polycythaemia
vera (PV).
Mazcd
MPNVoice
in
MPN Voice
12 years ago
what is the difference between secondary and Primary Polycythaemia.
I was recently diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I HAVE already had 12 lot's of blood taken (12x480ml) off and I am know on hydroxycarbamide. I am looking for help information in plain simple English Thanks
I was recently diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I HAVE already had 12 lot's of blood taken (12x480ml) off and I am know on hydroxycarbamide. I am looking for help information in plain simple English Thanks
StanM
in
MPN Voice
12 years ago
Possible link, High Prolactin and polycythaemia vera
I have recently read that prolactin production is high up on the pathway which includes JAK2 function and I can't help but think there has to be a connection with my two "unlucky" acquisitions of high prolactin and
polycythaemia
vera. Has anyone else had a similar experience?
I have recently read that prolactin production is high up on the pathway which includes JAK2 function and I can't help but think there has to be a connection with my two "unlucky" acquisitions of high prolactin and
polycythaemia
vera. Has anyone else had a similar experience?
Hidden
in
MPN Voice
12 years ago
Newbie with Primary Polycythaemia
Hi everyone, I've just come accross this site and wanted to introduce myself. I'was diagnosed with PV around 4 weeks ago, I went to the doc's because I started to have dizzy spells and became short of breath when I went to the gym or just fast walking/rushing around, I also had headaches and sickness
Hi everyone, I've just come accross this site and wanted to introduce myself. I'was diagnosed with PV around 4 weeks ago, I went to the doc's because I started to have dizzy spells and became short of breath when I went to the gym or just fast walking/rushing around, I also had headaches and sickness
NewBloom
in
MPN Voice
12 years ago
DLA
I have found it non descript no mention of the fatigue or side effects of HU this could be the reason people in the UK are having a hard time trying to get this payment please find enclosed link http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/
polycythaemia
I have found it non descript no mention of the fatigue or side effects of HU this could be the reason people in the UK are having a hard time trying to get this payment please find enclosed link http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/
polycythaemia
Oakley
in
MPN Voice
12 years ago
Polycythaemia!!!
Just a note really, to say hello everybody...and fellow sufferers! I'm 65, retired 3 years ago & was diagnosed with PPP, in 2004; my GP thought he had seen signs of it in 2000 - the diagnosis explained a lot & was a bit of a relief in some ways. I've been on 1 grm of Hydroxycarbamide X 5 days & 1.5 grms
Just a note really, to say hello everybody...and fellow sufferers! I'm 65, retired 3 years ago & was diagnosed with PPP, in 2004; my GP thought he had seen signs of it in 2000 - the diagnosis explained a lot & was a bit of a relief in some ways. I've been on 1 grm of Hydroxycarbamide X 5 days & 1.5 grms
fleetpete
in
MPN Voice
12 years ago
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