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Venesection
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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
I was diagnosed with PV in 2016 and live in North Yorkshire
Hi I live in North Yorkshire and was diagnosed with PV in October 2016. Like many peopleI had tell tale signs but didn't recognise them initially I had night sweats, tinglingvin my hands, fatigue and most serious a DVT and PE out of the blue . I was eventually diagnosed following a routine blood test
Hi I live in North Yorkshire and was diagnosed with PV in October 2016. Like many peopleI had tell tale signs but didn't recognise them initially I had night sweats, tinglingvin my hands, fatigue and most serious a DVT and PE out of the blue . I was eventually diagnosed following a routine blood test
Dianne-Guisborough
in
MPN Voice
5 years ago
ET and venesections ???
I was diagnosed some 4 years ago with an ETjak2. Since then I've been on Pegasys 45mg/fortnightly. My problem is that I've got a lot of allergies because of the injections (or at least I suppose they are due to the injections, cause they are different from my other allergies). My question is : Does
I was diagnosed some 4 years ago with an ETjak2. Since then I've been on Pegasys 45mg/fortnightly. My problem is that I've got a lot of allergies because of the injections (or at least I suppose they are due to the injections, cause they are different from my other allergies). My question is : Does
yarrowleaf
in
MPN Voice
5 years ago
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My update, for mouth sores test.
So now, no more Hydroxycarbomide but in two weeks time I will have
venesection
, if the blood comes easy and the blood test later shows platelets good, I will stay doing that hopefully maybe just once a month. If this doesn’t work I will have to have the interferon injection.
So now, no more Hydroxycarbomide but in two weeks time I will have
venesection
, if the blood comes easy and the blood test later shows platelets good, I will stay doing that hopefully maybe just once a month. If this doesn’t work I will have to have the interferon injection.
Yvette49
in
MPN Voice
5 years ago
Outpatient dilemma.
I was discharged and the follow up instructions are that I do
venesection
, MIR scan and a fasting feriton test as an outpatient. Ablation pending. That was almost 4 weeks ago and I have had no further instructions from the hospital.
I was discharged and the follow up instructions are that I do
venesection
, MIR scan and a fasting feriton test as an outpatient. Ablation pending. That was almost 4 weeks ago and I have had no further instructions from the hospital.
Palpman
in
British Heart Foundation
5 years ago
How did you find out that you had PV?
Just curious how others on here found out that they had PV. The first opportunity I had for diagnosis was missed at my GPs surgery when they ignored abnormal results from a routine blood test from a Healthy Heart Clinic. Despite the lab marking the results as abnormally high, the reviewing GP marked
Just curious how others on here found out that they had PV. The first opportunity I had for diagnosis was missed at my GPs surgery when they ignored abnormal results from a routine blood test from a Healthy Heart Clinic. Despite the lab marking the results as abnormally high, the reviewing GP marked
Transporter
in
MPN Voice
5 years ago
Pegasys - possibly closer to slowing progression than anything else?
Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys. However the quote is from a highly respected MPN specialist today. I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections
Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys. However the quote is from a highly respected MPN specialist today. I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections
Paul123456
in
MPN Voice
5 years ago
ET CALR+ & Venesection?
Hi I had my 4 monthly check up this week and my consultant was concerned about my haematocrit and to review it in 6 weeks with a possible
venesection
. I always assumed venesections were a PV thing.
Hi I had my 4 monthly check up this week and my consultant was concerned about my haematocrit and to review it in 6 weeks with a possible
venesection
. I always assumed venesections were a PV thing.
Jonnymitts
in
MPN Voice
5 years ago
Have to decide between Hydroxycarbide or Interferon on July 4th? Cant i just keep having a Venesection every few months? I have ET
Can anyone help me chose ? I am 59yrs so have been told that I have a choice as Interferon used for younger people and Hydro used for older people, both have risks. I platelet count of 550 and really don't want to take any tablets or have injections as I have so much work to do and finish off and very
Can anyone help me chose ? I am 59yrs so have been told that I have a choice as Interferon used for younger people and Hydro used for older people, both have risks. I platelet count of 550 and really don't want to take any tablets or have injections as I have so much work to do and finish off and very
Hildrethbird
in
MPN Voice
5 years ago
A guideline for the diagnosis and management of polycythaemia vera. A British Society for Haematology Guideline
Where frequent
venesection
is needed to achieve this target then an alternative approach using a cytoreductive agent may need to be considered.
Where frequent
venesection
is needed to achieve this target then an alternative approach using a cytoreductive agent may need to be considered.
PVPVPV
in
MPN Voice
5 years ago
Feeling much better.
Yesterday I had a
venesection
. I hadn't had one for 12 weeks and to be honest I was struggling. I think for me it should be every 8 weeks max. Today I feel 20 years younger!!
Yesterday I had a
venesection
. I hadn't had one for 12 weeks and to be honest I was struggling. I think for me it should be every 8 weeks max. Today I feel 20 years younger!!
RobPV
in
MPN Voice
5 years ago
A model of good MPN care
I recently had a crisis of confidence in the care my husband (who has PV) was getting. The nurse in charge of his case left the clinic and there seemed to be no replacement who knew what was going on. Happily, the nurse came back (he’s a hero...) and all is well. So, I thought I’d share on here what
I recently had a crisis of confidence in the care my husband (who has PV) was getting. The nurse in charge of his case left the clinic and there seemed to be no replacement who knew what was going on. Happily, the nurse came back (he’s a hero...) and all is well. So, I thought I’d share on here what
MarybellM
in
MPN Voice
5 years ago
Started HU
Hi everyone! This is my first post. I have been diagnosed with PV JAK2 positive for 3.5 years and have been on this forum reading and sometimes responding. I am 55 year old female from Canada. After just a few venesections I settled down into platelets gradually rising. When they hit 1800 I conceded
Hi everyone! This is my first post. I have been diagnosed with PV JAK2 positive for 3.5 years and have been on this forum reading and sometimes responding. I am 55 year old female from Canada. After just a few venesections I settled down into platelets gradually rising. When they hit 1800 I conceded
digijools
in
MPN Voice
5 years ago
Polycythemia without any symptoms
I have not experienced any symptoms at all, either before or after
venesection
and only venesected after HCT high during blood test. Should I expect symptoms to occur eventually or do some people just live their lives being venesected and taking aspirin with no other symptoms?
I have not experienced any symptoms at all, either before or after
venesection
and only venesected after HCT high during blood test. Should I expect symptoms to occur eventually or do some people just live their lives being venesected and taking aspirin with no other symptoms?
cythemia
in
MPN Voice
5 years ago
Solutions to itchiness?
Occasional
venesection
and daily Aspirin so far. I have extreme itchy legs at times (seems no pattern as to when it comes but it will be mornings) and the only thing I can do is go for a very brisk walk to eleveate the symptoms.
Occasional
venesection
and daily Aspirin so far. I have extreme itchy legs at times (seems no pattern as to when it comes but it will be mornings) and the only thing I can do is go for a very brisk walk to eleveate the symptoms.
Boss1
in
MPN Voice
5 years ago
Platelets rising...
Since May 2018 my husband’s platelets have been rising and are now at 908. Neutrophils are also a bit high at 7.9 and Haematocrit at 0.49. All very technical and neither of us are sure how worried we should be. Thought someone out there might know. He’s just on venesections and clopidrogel and they’ve
Since May 2018 my husband’s platelets have been rising and are now at 908. Neutrophils are also a bit high at 7.9 and Haematocrit at 0.49. All very technical and neither of us are sure how worried we should be. Thought someone out there might know. He’s just on venesections and clopidrogel and they’ve
MarybellM
in
MPN Voice
5 years ago
High HCT and RBCs from stress?
Hi All, My son, age 22, had high RBCs, hemoglobin and hematocrit that were noted after his third routine CBC of his life. They were high and trending up over time. Referred to hematology and they did a lot more blood tests and supposedly ruled out all the things that could be causing his counts to be
Hi All, My son, age 22, had high RBCs, hemoglobin and hematocrit that were noted after his third routine CBC of his life. They were high and trending up over time. Referred to hematology and they did a lot more blood tests and supposedly ruled out all the things that could be causing his counts to be
Sammie1997
in
MPN Voice
5 years ago
Venesection failures
Hi Has anyone had problems with venesections? My husband has now had 3 consecutive failures where the blood has been too thick for the procedure to work. The equipment at our small rural hospital may be to blame and they are looking into contacting bigger hospitals to see if there’s any advice. Meanwhile
Hi Has anyone had problems with venesections? My husband has now had 3 consecutive failures where the blood has been too thick for the procedure to work. The equipment at our small rural hospital may be to blame and they are looking into contacting bigger hospitals to see if there’s any advice. Meanwhile
MarybellM
in
MPN Voice
5 years ago
Recently diagnosed with PV
Hi All, I was diagnosed with PV about 5 months ago. My haemocratit level was 65 and my hemoglobin was 23.6. I am 43 years old. My hematologist initially tried to do venesections but my blood was too thick and I had to go on hydrea for a few months to get my levels down. This was successful and my levels
Hi All, I was diagnosed with PV about 5 months ago. My haemocratit level was 65 and my hemoglobin was 23.6. I am 43 years old. My hematologist initially tried to do venesections but my blood was too thick and I had to go on hydrea for a few months to get my levels down. This was successful and my levels
Brian27
in
MPN Voice
5 years ago
Venesection control
Hi all I’m PV Jak2+ . Currently I am on 12 hydroxy a week , aspirin. My platelets have come down slowly from 1600 to around 600 and hopefully will fall further. I originally tried Pegasus with no effect at all. My question is is there a treatment that will also control heamocrit and negate the need for
Hi all I’m PV Jak2+ . Currently I am on 12 hydroxy a week , aspirin. My platelets have come down slowly from 1600 to around 600 and hopefully will fall further. I originally tried Pegasus with no effect at all. My question is is there a treatment that will also control heamocrit and negate the need for
Joerp
in
MPN Voice
5 years ago
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