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A recent diagnosis of polycythaemia.
Does anyone else have B12 deficiency with
polycythaemia
? If so, did injections increase red cell production?
Does anyone else have B12 deficiency with
polycythaemia
? If so, did injections increase red cell production?
Strauss
in
MPN Voice
5 years ago
Hypothyroidism, but low TSH
And have been unwell for over a year, and I have high red blood cells, and have for the last two blood tests, I am light headed and have stomach erosion, pins and needles etc;etc; I have read that it could be a sign of PV
Polycythaemia
Vera.
And have been unwell for over a year, and I have high red blood cells, and have for the last two blood tests, I am light headed and have stomach erosion, pins and needles etc;etc; I have read that it could be a sign of PV
Polycythaemia
Vera.
Mannequin18
in
Thyroid UK
5 years ago
A guideline for the diagnosis and management of polycythaemia vera. A British Society for Haematology Guideline
My haematologist, Dr Francis at Sheffield Hallamshire Hospital, was thoughtful enough to point this out to me and gave me the reference. He told me that, based on the guidelines, he wanted to increase my hydroxy rather than send me for my usual venesection. I understand this is because I am now over
My haematologist, Dr Francis at Sheffield Hallamshire Hospital, was thoughtful enough to point this out to me and gave me the reference. He told me that, based on the guidelines, he wanted to increase my hydroxy rather than send me for my usual venesection. I understand this is because I am now over
PVPVPV
in
MPN Voice
5 years ago
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Just to say hi
I was diagnosed with
polycythaemia
14 years ago . Been on hydroxy carbamide since then .. generally all ok but Tuesdays visit to derrifiord revealed a noticeable drop in neutrophils. And so a reduction in my drugs to try and sort it . Any change is a bit of a worry
I was diagnosed with
polycythaemia
14 years ago . Been on hydroxy carbamide since then .. generally all ok but Tuesdays visit to derrifiord revealed a noticeable drop in neutrophils. And so a reduction in my drugs to try and sort it . Any change is a bit of a worry
redvanman
in
MPN Voice
5 years ago
Not diagnosed with anything, just a few questions
I’m posting here as a few years ago when I was very bad with these symptoms, I did wonder if I can get secondary
polycythaemia
. It was a few weeks after a bad chest infection (pre asthma diagnosis) and I did also have lots of itching especially after showers.
I’m posting here as a few years ago when I was very bad with these symptoms, I did wonder if I can get secondary
polycythaemia
. It was a few weeks after a bad chest infection (pre asthma diagnosis) and I did also have lots of itching especially after showers.
haggisplant
in
MPN Voice
5 years ago
I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.
Would like to hear from others with my condition.
Would like to hear from others with my condition.
Chez1947
in
MPN Voice
5 years ago
Idiopathic erythrocytosis
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis,
Polycythaemia
and PV.
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis,
Polycythaemia
and PV.
Aime
in
MPN Voice
6 years ago
Hydrea
I am 76,
Polycythaemia
Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have to have another bleed. I tolerate these well but find they make me tired and breathless.
I am 76,
Polycythaemia
Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have to have another bleed. I tolerate these well but find they make me tired and breathless.
lucieboo
in
MPN Voice
6 years ago
Tamarin study update and a new study now recruiting
Vera Myelofibrosis, or post-Essential Thrombocythaemia Myelofibrosis who have failed previous treatment with a JAK inhibitor; and in patients with phlebotomy-dependent
Polycythaemia
Vera.
Vera Myelofibrosis, or post-Essential Thrombocythaemia Myelofibrosis who have failed previous treatment with a JAK inhibitor; and in patients with phlebotomy-dependent
Polycythaemia
Vera.
Mazcd
MPNVoice
in
MPN Voice
6 years ago
"Devotions upon Emergent Occasions" - BMB results are in - PV confirmed not MF
Polycythaemia
Vera confirmed, not Myleofibrosis for those tracking the technical stuff. I love my work as a coach and facilitator so much, and one of my greatest fears was that I wouldn't be able to complete what I feel I'm here to co-create.
Polycythaemia
Vera confirmed, not Myleofibrosis for those tracking the technical stuff. I love my work as a coach and facilitator so much, and one of my greatest fears was that I wouldn't be able to complete what I feel I'm here to co-create.
ilovetoastwithbutter
in
MPN Voice
6 years ago
Survey for the MOSAICC Study - we need your help
Help us with developing a questionnaire for the MOSAICC study which will be the world’s largest study to try to identify the cause(s) of Myeloproliferative neoplasms (MPNs) including
polycythaemia
vera, essential thrombocythaemia and primary myelofibrosis.
Help us with developing a questionnaire for the MOSAICC study which will be the world’s largest study to try to identify the cause(s) of Myeloproliferative neoplasms (MPNs) including
polycythaemia
vera, essential thrombocythaemia and primary myelofibrosis.
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Polycythaemia or not?
Hi All, I really wanted to ask a question which has a very important answer for me. If it turns out that I don’t have PV but an idiopathic erythrocytosis which apparently can migrate to PV and Hodgkin cancers, can I still take part in this forum? I would miss you all very much and also the strong support
Hi All, I really wanted to ask a question which has a very important answer for me. If it turns out that I don’t have PV but an idiopathic erythrocytosis which apparently can migrate to PV and Hodgkin cancers, can I still take part in this forum? I would miss you all very much and also the strong support
Aime
in
MPN Voice
6 years ago
Introduction
Hi everyone, I'm 53 live in Gibraltar and have recently been diagnosed with
Polycythaemia
Vera. My bone marrow biopsy confirmed that I was Jak2+ and ultrasound scan that my spleen was enlarged. I've had 5 venesections thus far and have a 6th scheduled in a couple of weeks.
Hi everyone, I'm 53 live in Gibraltar and have recently been diagnosed with
Polycythaemia
Vera. My bone marrow biopsy confirmed that I was Jak2+ and ultrasound scan that my spleen was enlarged. I've had 5 venesections thus far and have a 6th scheduled in a couple of weeks.
AndW65
in
MPN Voice
6 years ago
PD & MPN blood disorder
I was diagnosed with PD 4 years ago then 3 years ago
Polycythaemia
Rubra Vera. Never know which symptoms to attribute to which condition. Also I’ve heard turmeric is good for PD but may not be good for PV. Anyone else with both?
I was diagnosed with PD 4 years ago then 3 years ago
Polycythaemia
Rubra Vera. Never know which symptoms to attribute to which condition. Also I’ve heard turmeric is good for PD but may not be good for PV. Anyone else with both?
Albt4z
in
Cure Parkinson's
6 years ago
Bone pain - arthritis or Polycythaemia?
Hi Guys, I just wanted to ask, how many of you, who have PV or another MPN suffer from arthritic like bone pain - best way I can describe it, is toothache but not in your mouth! I’m being plagued by what I thought was osteoarthritis and I just wondered if anyone else had already had this connection made
Hi Guys, I just wanted to ask, how many of you, who have PV or another MPN suffer from arthritic like bone pain - best way I can describe it, is toothache but not in your mouth! I’m being plagued by what I thought was osteoarthritis and I just wondered if anyone else had already had this connection made
Aime
in
MPN Voice
6 years ago
has anyone had a hip replacement with polycythaemia
I have
polycythaemia
vera primary
I have
polycythaemia
vera primary
leapi
in
MPN Voice
6 years ago
SYMPTOMS OF PRIMARY POLYCYTHAEMIA
I have been told by my GP and Haematologist that I should have no noticeable symptoms with
Polycythaemia
. However since being diagnosed in March 2017 I have had severe lightheadedness, nauseousness and extreme fatigue. I take hydroxycarbamide 500 mg and Aspirin 75 mg.
I have been told by my GP and Haematologist that I should have no noticeable symptoms with
Polycythaemia
. However since being diagnosed in March 2017 I have had severe lightheadedness, nauseousness and extreme fatigue. I take hydroxycarbamide 500 mg and Aspirin 75 mg.
Heather270240
in
MPN Voice
6 years ago
2 years with polycythaemia vera
2 years today i made that trip to a&e. I thought I had a trapped nerve in my neck. Turns out it was PV and my HCT was 68! I'm thankful it was spotted before a blood clot or another thrombotic event. I have educated myself (and everyone around me), at the same time enjoyed so much over the last 2 years
2 years today i made that trip to a&e. I thought I had a trapped nerve in my neck. Turns out it was PV and my HCT was 68! I'm thankful it was spotted before a blood clot or another thrombotic event. I have educated myself (and everyone around me), at the same time enjoyed so much over the last 2 years
EleanorPV
in
MPN Voice
6 years ago
Venection help please?
I have secondary
polycythaemia
and would like to know how you manage to get a venesection? I have hormone injections (testosterone every two weeks since 2002) and this means my htc and hgb are over 54% and 20nmols/L respectively all the time.
I have secondary
polycythaemia
and would like to know how you manage to get a venesection? I have hormone injections (testosterone every two weeks since 2002) and this means my htc and hgb are over 54% and 20nmols/L respectively all the time.
Ashto70
in
MPN Voice
6 years ago
High blood pressure
Hi all, I was diagnosed with
Polycythaemia
a year ago. I was initially treated with Asprin, followed by venesection . Three months ago I started Hydroxycarbamide 500 mg daily and Allopurinol 300mg.
Hi all, I was diagnosed with
Polycythaemia
a year ago. I was initially treated with Asprin, followed by venesection . Three months ago I started Hydroxycarbamide 500 mg daily and Allopurinol 300mg.
paddy67
in
MPN Voice
6 years ago
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