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Venesection
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Lesley aka Sand Dancer šš»
My PV journey is just beginning and I have my first
Venesection
next week. Haematocrit gone Nuts along with my Platelets trying to scale the Eiffel Tower.. During the
Venesection
I will be thinking of Lesley on my first go at it. I can hear her saying, " we can do this ehh"..
My PV journey is just beginning and I have my first
Venesection
next week. Haematocrit gone Nuts along with my Platelets trying to scale the Eiffel Tower.. During the
Venesection
I will be thinking of Lesley on my first go at it. I can hear her saying, " we can do this ehh"..
pontygirl
in
MPN Voice
4 years ago
Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020
guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
We will try to summarise some relevant information
1.Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban),
venesection
guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults
We will try to summarise some relevant information
1.Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban),
venesection
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Venesections and Mobile Chemotherapy Unit
I was diagnosed with PV some years ago and need a
venesection
every two months. I live in a coastal town in Somerset. There is a small hospital but it is unable to offer treatment. A Mobile Chemotherapy Unit (MCU) visits the town every week and I was able to have my treatment on that.
I was diagnosed with PV some years ago and need a
venesection
every two months. I live in a coastal town in Somerset. There is a small hospital but it is unable to offer treatment. A Mobile Chemotherapy Unit (MCU) visits the town every week and I was able to have my treatment on that.
DavidBates
in
MPN Voice
4 years ago
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Upping Hydroxycarbamide dose
I went for my first Heam check-up on Monday 30th Dec since starting Hydroxycarbomide on the 2nd December - as a recap I'm PRV Jak2+ since 2012, a stroke survivor and
venesection
is no longer an available option.
I went for my first Heam check-up on Monday 30th Dec since starting Hydroxycarbomide on the 2nd December - as a recap I'm PRV Jak2+ since 2012, a stroke survivor and
venesection
is no longer an available option.
Kari1961
in
MPN Voice
4 years ago
Producing new red blood cells
I have Haemochromatosis with mild iron overload which requires regular blood letting (venesections) until my ferritin reaches an optimum level of 50 with a transferrin saturation of below 50%. The venesections should be weekly but for some reason my body canāt tolerate this so I am having monthly sessions
I have Haemochromatosis with mild iron overload which requires regular blood letting (venesections) until my ferritin reaches an optimum level of 50 with a transferrin saturation of below 50%. The venesections should be weekly but for some reason my body canāt tolerate this so I am having monthly sessions
B12newby
in
Pernicious Anaemia Society
4 years ago
COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020
summarise recommendations from UK experts in relation to management of MPNs during the current COVID-19 outbreak: 1.There is currently no evidence that patients under 70 with a myeloproliferative neoplasm (ET or PV) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban),
venesection
summarise recommendations from UK experts in relation to management of MPNs during the current COVID-19 outbreak: 1.There is currently no evidence that patients under 70 with a myeloproliferative neoplasm (ET or PV) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban),
venesection
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Coventry Haematology
I may have to change my consultant, does anyone have any experience of any Haematology Consultant &
Venesection
in the Coventry area? Thanks..
I may have to change my consultant, does anyone have any experience of any Haematology Consultant &
Venesection
in the Coventry area? Thanks..
shiftzz
in
MPN Voice
4 years ago
PV Jak2+ Just beginning Hydroxycarbamide
My poor veins have had enough, and
venesection
, even with the vascular scan team hunting for a decent vein became impossible. The doseage I've been given is 500mg seven days a week. I've no idea whether this is a common place to start. Does it sound 'normal'?
My poor veins have had enough, and
venesection
, even with the vascular scan team hunting for a decent vein became impossible. The doseage I've been given is 500mg seven days a week. I've no idea whether this is a common place to start. Does it sound 'normal'?
Kari1961
in
MPN Voice
4 years ago
PV and high WBC
Hi, does anyone have PV with a high WBC thatās controlled only by venesections rather than medication? Not sure what the risks are associated with raised WBC....
Hi, does anyone have PV with a high WBC thatās controlled only by venesections rather than medication? Not sure what the risks are associated with raised WBC....
MJoye
in
MPN Voice
4 years ago
Newly joined
Had JAK2 ET for 15 years now, with no symptoms and only being treated with Venesections. It is now changing to Myeloid Fibrosis, still with no symptoms - but nows the time to start taking Interferon to manage it . Wondering what peopleās experience of taking this is
Had JAK2 ET for 15 years now, with no symptoms and only being treated with Venesections. It is now changing to Myeloid Fibrosis, still with no symptoms - but nows the time to start taking Interferon to manage it . Wondering what peopleās experience of taking this is
Tylerdog1
in
MPN Voice
4 years ago
Drug trial
Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3 years. I've just had to stop taking it because I was having regular cellulitis on my legs and was virtually living on antibiotics. My haemo took
Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3 years. I've just had to stop taking it because I was having regular cellulitis on my legs and was virtually living on antibiotics. My haemo took
Splb3317
in
MPN Voice
4 years ago
PV question
Hi, Iām new to this site and would like to talk to others in a similar situation to myself. Iām 55 and was diagnosed with PV JAK2 genetic fault in August. Iāve had several venesections and my rbc has now stabilised. Iāve always had a high wbc (20) and an enlarged spleen. Today the dr has decided to
Hi, Iām new to this site and would like to talk to others in a similar situation to myself. Iām 55 and was diagnosed with PV JAK2 genetic fault in August. Iāve had several venesections and my rbc has now stabilised. Iāve always had a high wbc (20) and an enlarged spleen. Today the dr has decided to
MJoye
in
MPN Voice
4 years ago
PV
I have a
venesection
every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have been taking Ruxolitinib for 4 weeks. I wondered how other patients are coping with this medication,
I have a
venesection
every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have been taking Ruxolitinib for 4 weeks. I wondered how other patients are coping with this medication,
MamPRV
in
MPN Voice
5 years ago
JAK2+that its primary & secondary PV plus pseudo
I was diagnosed with JAK2 + PV 4 weeks ago after having a heart attack. My Haemoglobin is 169 and Haematocrit is 54. I'm starting 1 -2 venesections a week. I've been really anxious of having another heart attack or stroke until my levels come down. Has anyone had levels this high?
I was diagnosed with JAK2 + PV 4 weeks ago after having a heart attack. My Haemoglobin is 169 and Haematocrit is 54. I'm starting 1 -2 venesections a week. I've been really anxious of having another heart attack or stroke until my levels come down. Has anyone had levels this high?
Beingpositive121
in
MPN Voice
4 years ago
Alternative treatments for Busulfan
My wife was diagnosed with E.T. five and half years ago, she is 78 and lives in the UK. At the time, the main treatments were Hydroxycarbamide, followed by Anagrelide and Busulfan as a last resort. She was first treated with Hydrox but the side effects were severe and she was then treated with Anagrelide
My wife was diagnosed with E.T. five and half years ago, she is 78 and lives in the UK. At the time, the main treatments were Hydroxycarbamide, followed by Anagrelide and Busulfan as a last resort. She was first treated with Hydrox but the side effects were severe and she was then treated with Anagrelide
Folly41
in
MPN Voice
4 years ago
Hct levels
Last week, saw a locum and my hct was 0.451, so no change to meds (hydro and Interferon) but a
venesection
required. Damn that 0.001.
Last week, saw a locum and my hct was 0.451, so no change to meds (hydro and Interferon) but a
venesection
required. Damn that 0.001.
shiftzz
in
MPN Voice
5 years ago
Interval Between Venesections
However, my most recent
venesection
on 9/26 was needed after 63 days. I was a bit discouraged that the time interval between venesections decreased for the first time.
However, my most recent
venesection
on 9/26 was needed after 63 days. I was a bit discouraged that the time interval between venesections decreased for the first time.
JP2018
in
MPN Voice
5 years ago
Clopidogrel
Hello, so good to have this forum. I am struggling with pv. My levels are up and down like a yo yo as are the amounts of hydroxy I take, plus Iām back on venesections. I am fatigued as always and my blood pressure is high despite meds. Though for some reason this morning it went down to 119/76 from 155
Hello, so good to have this forum. I am struggling with pv. My levels are up and down like a yo yo as are the amounts of hydroxy I take, plus Iām back on venesections. I am fatigued as always and my blood pressure is high despite meds. Though for some reason this morning it went down to 119/76 from 155
Mal42
in
MPN Voice
5 years ago
Polycythaemia Vera
Hi, I'm new to this, but it has been recommended by one of my haematologist doctors. I'm a 54 year old male who was diagnosed with Polycythaemia Vera, Exon 12 strain some 4 years ago now. It has been controlled with first asprin, now clopidogrel due to chronic acid indigestion. I have venesections when
Hi, I'm new to this, but it has been recommended by one of my haematologist doctors. I'm a 54 year old male who was diagnosed with Polycythaemia Vera, Exon 12 strain some 4 years ago now. It has been controlled with first asprin, now clopidogrel due to chronic acid indigestion. I have venesections when
mrbrindle
in
MPN Voice
5 years ago
Possible HH and panicking a bit about damage to joints and other organs
Hi, I could use some advice, I may have HH (Dad is HH) and I am panicking that I may already have damage. I asked my GP to test for HH when I originally found out my Dad had it, probably around 2012. In hindsight, I think they tested ferritin, not for the genetics. I was given no advice or feedback and
Hi, I could use some advice, I may have HH (Dad is HH) and I am panicking that I may already have damage. I asked my GP to test for HH when I originally found out my Dad had it, probably around 2012. In hindsight, I think they tested ferritin, not for the genetics. I was given no advice or feedback and
F1ona
in
Haemochromatosis Society UK
5 years ago
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