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Venesection
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Sliced Bread & Iron Additives - Not the The best thing since?
Hi all, I have PV, JAK2+ and on Hydroxy and Aspirin with the odd
Venesection
when needed. In order to maintain my HCT (Haematocrit) at my target level, i watch my iron intake as i'm sure others do with similar diagnoses.
Hi all, I have PV, JAK2+ and on Hydroxy and Aspirin with the odd
Venesection
when needed. In order to maintain my HCT (Haematocrit) at my target level, i watch my iron intake as i'm sure others do with similar diagnoses.
Dubmatix
in
MPN Voice
7 years ago
New diagnosed Question
Hi All, I have been diagnosed JAK2+ MPN in the last few weeks. I was getting pain in my fingers and toes and dizzy spells and a blood test showed my red cells up at 900 odd. I have had bone marrow biopsy and it shows no scarring right now so its one or both of PCV or ET we think. I am currently just
Hi All, I have been diagnosed JAK2+ MPN in the last few weeks. I was getting pain in my fingers and toes and dizzy spells and a blood test showed my red cells up at 900 odd. I have had bone marrow biopsy and it shows no scarring right now so its one or both of PCV or ET we think. I am currently just
Joerp
in
MPN Voice
7 years ago
Haemochromatosis & MC
Hi all, I was diagnosed with haemochromatosis (hereditary blood disease where your body stores too much iron) after our first unsuccessful cycle which unfortunately ended in two miscarriages. I spoke to my haemo consultant who wasn't aware of any link between haemo and infertility/miscarriages, but
Hi all, I was diagnosed with haemochromatosis (hereditary blood disease where your body stores too much iron) after our first unsuccessful cycle which unfortunately ended in two miscarriages. I spoke to my haemo consultant who wasn't aware of any link between haemo and infertility/miscarriages, but
SweetBasil
in
Fertility Network UK
7 years ago
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Polythycemia vera
Hi I was recently diagnosed with PV jack2 I have had 9 pints of blood removed via
venesection
, & my levels have dropped, seeing consultant again in 4weeks...I would love to go abroad soon, how do I stand for insurance?
Hi I was recently diagnosed with PV jack2 I have had 9 pints of blood removed via
venesection
, & my levels have dropped, seeing consultant again in 4weeks...I would love to go abroad soon, how do I stand for insurance?
Sueworthington
in
MPN Voice
7 years ago
Update on my haemochromatosis.
I've Finally been referred to my local hospital to have my
venesection
done there, rather than at the one ive been going to, the only reason being distance and the fact that for me to drive the 40 mile round trip I'd be in absolute agony.
I've Finally been referred to my local hospital to have my
venesection
done there, rather than at the one ive been going to, the only reason being distance and the fact that for me to drive the 40 mile round trip I'd be in absolute agony.
Debbs73
in
Pain Concern
7 years ago
Summer is here - oh dear help!!!
I have been doing really well and take hydroxy 500 mg daily and
venesection
monthly. But I'm now feeling dreadful ever since the temperature has risen. I know all about dealing with the sun but need some help/advice on coping with the heat.
I have been doing really well and take hydroxy 500 mg daily and
venesection
monthly. But I'm now feeling dreadful ever since the temperature has risen. I know all about dealing with the sun but need some help/advice on coping with the heat.
Hilarya
in
MPN Voice
7 years ago
Why have I now got anemia?
Last check up I was told I had anemia which did at least explain my lethargy. The Haematologist asked me about any other symtoms I'd noticed: Acid reflux, jaded appetite, night sweats were the most obvious. To my surprise, as I was expecting the anemia to be PV related, I was told that I was to be referred
Last check up I was told I had anemia which did at least explain my lethargy. The Haematologist asked me about any other symtoms I'd noticed: Acid reflux, jaded appetite, night sweats were the most obvious. To my surprise, as I was expecting the anemia to be PV related, I was told that I was to be referred
Dodders
in
MPN Voice
7 years ago
Polycythemia vera
Venesection
and was discharged to care of GP Just lately I see him looking very red faced and sleeping at any opportunity . He encouraged him to see GP who did bloods . GP has done nothing but could you please give opinion on his blood test done a month or so ago. Haemoglobin 177.
Venesection
and was discharged to care of GP Just lately I see him looking very red faced and sleeping at any opportunity . He encouraged him to see GP who did bloods . GP has done nothing but could you please give opinion on his blood test done a month or so ago. Haemoglobin 177.
Gcart
in
MPN Voice
7 years ago
Pv, who do you see?
Hi all I'd like to ask which nhs professionals do you see and how often? I'm a bit underwhelmed by information and wondered if others have the same experience. I was diagnosed with PV in Feb and saw my consultant. He said he'd see me again in a year. I was on biweekly venesections. My bloods dropped
Hi all I'd like to ask which nhs professionals do you see and how often? I'm a bit underwhelmed by information and wondered if others have the same experience. I was diagnosed with PV in Feb and saw my consultant. He said he'd see me again in a year. I was on biweekly venesections. My bloods dropped
Emeraldpv
in
MPN Voice
7 years ago
Hydroxycarbamide newbie
Hi, I have just started hydroxycarbamide 3 days ago and really appreciated reading some of your experiences. I have Jak2 positive etc etc & after 3 yrs of monitoring & venesections, I had a bone marrow biopsy which also revealed smouldering myeloma. My platelets have hit over 850 & although initially
Hi, I have just started hydroxycarbamide 3 days ago and really appreciated reading some of your experiences. I have Jak2 positive etc etc & after 3 yrs of monitoring & venesections, I had a bone marrow biopsy which also revealed smouldering myeloma. My platelets have hit over 850 & although initially
Belgobrit72
in
MPN Voice
7 years ago
Desperate for help! Any ideas? Constant brain for 3.5 years, tingling feet + hands, and lots more symptoms
Haven’t had
venesection
now since Feb 2017. Any help or direction would be really useful. Considering a full lyme test with Armin in Germany.
Haven’t had
venesection
now since Feb 2017. Any help or direction would be really useful. Considering a full lyme test with Armin in Germany.
Never20
in
Brain health
7 years ago
Persistent symptoms even when HCT is OK?
I go to the hospital every 8 weeks for a blood check and tend to have to have
venesection
due to raised HCT at every other visit - so
venesection
every 4 months.
I go to the hospital every 8 weeks for a blood check and tend to have to have
venesection
due to raised HCT at every other visit - so
venesection
every 4 months.
Kari1961
in
MPN Voice
7 years ago
Anagrelide and side effects
I have also had weekly venesections since November 2016 apart from one week when my HT was at target ( missing that week's
venesection
sent it back up again) . I am on warfarin and clopidegrol as i had a PE last year.
I have also had weekly venesections since November 2016 apart from one week when my HT was at target ( missing that week's
venesection
sent it back up again) . I am on warfarin and clopidegrol as i had a PE last year.
Dianne-Guisborough
in
MPN Voice
7 years ago
buttons1
Hi I got diagnosed with PV in July 2016. Put all the symptoms down to long hours and having to use a computer on a regular basis. Disturbed vision I put down to needing my eyes testing. Got diagnosed by pure chance, having to go to my GP for another problem. At the beginning, when having a number
Hi I got diagnosed with PV in July 2016. Put all the symptoms down to long hours and having to use a computer on a regular basis. Disturbed vision I put down to needing my eyes testing. Got diagnosed by pure chance, having to go to my GP for another problem. At the beginning, when having a number
bevnb
in
MPN Voice
7 years ago
Early retirement
After returning to work with my partial new knee plus a
venesection
, I am still suffering from quite bad fatigue and lethargy as well as pain from some new and old joint issues.
After returning to work with my partial new knee plus a
venesection
, I am still suffering from quite bad fatigue and lethargy as well as pain from some new and old joint issues.
Aime
in
MPN Voice
7 years ago
Should I be asking for ruxolitinib?
I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on
venesection
which was eventually only needed every six weeks.
I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on
venesection
which was eventually only needed every six weeks.
Fika500
in
MPN Voice
7 years ago
Iron deficiency and PV
Hi. I'm new to this Forum and am reassured to see that others are as confused as me about living with an MPN! My question relates to iron deficiency and PV. There seems to be a dearth of information out there! I was diagnosed with ET about four years ago. The diagnosis was revised to PV last Autumn
Hi. I'm new to this Forum and am reassured to see that others are as confused as me about living with an MPN! My question relates to iron deficiency and PV. There seems to be a dearth of information out there! I was diagnosed with ET about four years ago. The diagnosis was revised to PV last Autumn
Ebot
in
MPN Voice
7 years ago
MPN Sufferer
husband diagnosed with MPN possibly PV he is now coming of Pregabalin slowly with the hope very soon he will get Ruxolitinib. Coming off the Pregabalin he appears to be going backwards worse night sweats and itching. He still cant take showers or baths very often. 3 Venesections 1st 2days ok then back
husband diagnosed with MPN possibly PV he is now coming of Pregabalin slowly with the hope very soon he will get Ruxolitinib. Coming off the Pregabalin he appears to be going backwards worse night sweats and itching. He still cant take showers or baths very often. 3 Venesections 1st 2days ok then back
waddles22
in
MPN Voice
7 years ago
Nose bleed
Hi Does anyone know if a nose bleed is a symptom of PV or from the
venesection
I had on Friday? I've not had a nose bleed since I was a child. I had a headache last night and felt nauseous all through the night, got up this morning and my nose just started bleeding.
Hi Does anyone know if a nose bleed is a symptom of PV or from the
venesection
I had on Friday? I've not had a nose bleed since I was a child. I had a headache last night and felt nauseous all through the night, got up this morning and my nose just started bleeding.
Jacqx17
in
MPN Voice
7 years ago
PRV stabilisation question
Hi.. I'm interested to hear from PRV patients who are now more stabilised using venesections to understand if you still suffer from the same fatigue still or if this eases at all over time as you are stabilised for longer per se? Thanks in advance!
Hi.. I'm interested to hear from PRV patients who are now more stabilised using venesections to understand if you still suffer from the same fatigue still or if this eases at all over time as you are stabilised for longer per se? Thanks in advance!
cwayman11
in
MPN Voice
7 years ago
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