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Venesection
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PV and fainting
hi all Hope you are taking care in this heat. I had a fainting episode at work today and wondered if there’s anything PV related. I’m aware it’s ridiculously hot and wondered if PV can impacts our capacity to manage heat ? I have been on aspirin and venesections last 6 years (annually for most
hi all Hope you are taking care in this heat. I had a fainting episode at work today and wondered if there’s anything PV related. I’m aware it’s ridiculously hot and wondered if PV can impacts our capacity to manage heat ? I have been on aspirin and venesections last 6 years (annually for most
Sanga
in
MPN Voice
2 years ago
High Iron levels and GCA Onset
Hi everyone, I have a 'research' question regarding onset of GCA. Did anyone here have high Iron levels just before onset of GCA symptoms ? I believe high iron levels were the cause of my vascular system going haywire. I developed Micro Vascular Angina totally out of the blue with 2 Cardiologists
Hi everyone, I have a 'research' question regarding onset of GCA. Did anyone here have high Iron levels just before onset of GCA symptoms ? I believe high iron levels were the cause of my vascular system going haywire. I developed Micro Vascular Angina totally out of the blue with 2 Cardiologists
MarksPoint
in
PMRGCAuk
2 years ago
Dx of PV confirmed
Hi all. So had phone call from my haematologist today to confirm a Dx of PV. I am off to sunny climates today for holiday so he has sent a letter to my GP to start me on aspirin when I return. Won’t see me again until planned Sept consult with him. Not sure when venesections will start, hopefully not
Hi all. So had phone call from my haematologist today to confirm a Dx of PV. I am off to sunny climates today for holiday so he has sent a letter to my GP to start me on aspirin when I return. Won’t see me again until planned Sept consult with him. Not sure when venesections will start, hopefully not
LittleLuna
in
MPN Voice
2 years ago
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Is it normal to be in constant pain?
Hi all I was diagnosed with Haemochromatosis about a year ago now, I'm going every 4 months for my
venesection
but I tried to contact my consultant about the constant joint pain and abdominal pain was wondering if its normal for this? But it seams I don't have a consultant anymore ?
Hi all I was diagnosed with Haemochromatosis about a year ago now, I'm going every 4 months for my
venesection
but I tried to contact my consultant about the constant joint pain and abdominal pain was wondering if its normal for this? But it seams I don't have a consultant anymore ?
J0hn88
in
Haemochromatosis Society UK
2 years ago
Newly diagnosed with PV JAK2 positive
Hi, I am new to this as recently found out have PV, started by mentioning to GP about terrible itching after showering, this had been going on for quite some time poss couple years on and off but had got worse and never realised it could be serious, had some blood tests Hb and heamocrit evaluated had
Hi, I am new to this as recently found out have PV, started by mentioning to GP about terrible itching after showering, this had been going on for quite some time poss couple years on and off but had got worse and never realised it could be serious, had some blood tests Hb and heamocrit evaluated had
Cityreach
in
MPN Voice
2 years ago
Fluctuating haematocrit
She had a prolapse operation on 10th March, so took an advisory further
venesection
pre-op. All apparently went well in the op so she is still in the recovery phase waiting for internal stitches to dissolve. Her haematocrit which had been steady around .45 is now fluctuating back upward.
She had a prolapse operation on 10th March, so took an advisory further
venesection
pre-op. All apparently went well in the op so she is still in the recovery phase waiting for internal stitches to dissolve. Her haematocrit which had been steady around .45 is now fluctuating back upward.
Strider52
in
MPN Voice
2 years ago
PV, Platelet dropping
I have just recovered a bit from the last
venesection
and now I have to do it again because my hematocrit is 0.45. What worries me is that my platelets are dropping and are currently low at 157. Do any of you have experience with platelet depletion and what that might mean?
I have just recovered a bit from the last
venesection
and now I have to do it again because my hematocrit is 0.45. What worries me is that my platelets are dropping and are currently low at 157. Do any of you have experience with platelet depletion and what that might mean?
cvita71
in
MPN Voice
2 years ago
Update 3 on appointment
The Locum advised, if it is PV she will start me on aspirin and
venesection
. Not wanting to do V yet as once I am on it, I am on it apparently. They would not be looking at any other treatments if it is PV due to my age (52 year old female).
The Locum advised, if it is PV she will start me on aspirin and
venesection
. Not wanting to do V yet as once I am on it, I am on it apparently. They would not be looking at any other treatments if it is PV due to my age (52 year old female).
LittleLuna
in
MPN Voice
2 years ago
Interferon alpha
I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a lot or venesections and it is now 0.5 .my target is 0.45. It has been suggested that I start on interferon alpha. Does anyone have experience
I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a lot or venesections and it is now 0.5 .my target is 0.45. It has been suggested that I start on interferon alpha. Does anyone have experience
Paul1214
in
MPN Voice
2 years ago
Newly Diagnosed PV
Hi I really don’t know what to say other than that I am just diagnosed with PV and yesterday had first
venesection
. I am absolutely terrified and trying my best not to worry but it’s in my head every waking moment.
Hi I really don’t know what to say other than that I am just diagnosed with PV and yesterday had first
venesection
. I am absolutely terrified and trying my best not to worry but it’s in my head every waking moment.
Hocus58
in
MPN Voice
2 years ago
Guy’s telephone appt on Tuesday. Advice and questions to ask please.
Morning everyone and happy Easter if you celebrate. I’m so grateful for this board and the information and support you all share. Thank you. I asked my gp to refer me to Guy’s and a telephone appt has come through for Tuesday 19th. I was confirmed Jak2 positive PV at Christmas and my haematocrit has
Morning everyone and happy Easter if you celebrate. I’m so grateful for this board and the information and support you all share. Thank you. I asked my gp to refer me to Guy’s and a telephone appt has come through for Tuesday 19th. I was confirmed Jak2 positive PV at Christmas and my haematocrit has
SarahPV
in
MPN Voice
2 years ago
Hematocrit level
I was wondering if anyone's haematologist gauges a
venesection
on current symptoms, rather than recommend Hematocrit level. I wonder if I am better at 44! Still new to all this!! I would appreciate your thoughts or how your levels are managed. 😁
I was wondering if anyone's haematologist gauges a
venesection
on current symptoms, rather than recommend Hematocrit level. I wonder if I am better at 44! Still new to all this!! I would appreciate your thoughts or how your levels are managed. 😁
Mauritiu
in
MPN Voice
2 years ago
Good news today 😊
I was diagnosed with PV in September last year. Had venesections over September/November every 2 weeks which brought my hematocrit to 44. It crept up slowly to 45.7 and had two venesections towards the end of February. My Hematocrit is now 40.6. I have been feeling so much better past few weeks 😊 but
I was diagnosed with PV in September last year. Had venesections over September/November every 2 weeks which brought my hematocrit to 44. It crept up slowly to 45.7 and had two venesections towards the end of February. My Hematocrit is now 40.6. I have been feeling so much better past few weeks 😊 but
Mauritiu
in
MPN Voice
2 years ago
AFIB link to Haemochromatosis
Listen to episode 9-10. https://haemochromatosis.org.au/haemochromatosis/resources/iron-matters-podcasts/ Luckily my HFE variant is compound heterozygous C282Y / H63D combo so not as severe but I still need three-monthly ferritin checks and occasional
venesection
(twice a year).
Listen to episode 9-10. https://haemochromatosis.org.au/haemochromatosis/resources/iron-matters-podcasts/ Luckily my HFE variant is compound heterozygous C282Y / H63D combo so not as severe but I still need three-monthly ferritin checks and occasional
venesection
(twice a year).
AussieHeart
in
Atrial Fibrillation Support
2 years ago
Help is on the way! I discovered MPN Voice back in mid Jan. I was actually thinking a platelet count of 760 was ok, since I had no symptom
Hunter and many others urged me to get help. By the time I did platelets were 913. I am being followed by Hem/Oncology, having venesections for 6 weeks, and of course, feel great. The happy news is that at your urging, my dear friends, I will be seeing an MPN specialist end of April. It takes away
Hunter and many others urged me to get help. By the time I did platelets were 913. I am being followed by Hem/Oncology, having venesections for 6 weeks, and of course, feel great. The happy news is that at your urging, my dear friends, I will be seeing an MPN specialist end of April. It takes away
BrookTownsend375
in
MPN Voice
2 years ago
Update
Perhaps the
venesection
should only have taken 1/2 pint of blood or I should have only had 1 week or 2 weeks of iron? Any thoughts/experiences are very welcome. Kindest regards Aime x😻😻
Perhaps the
venesection
should only have taken 1/2 pint of blood or I should have only had 1 week or 2 weeks of iron? Any thoughts/experiences are very welcome. Kindest regards Aime x😻😻
Aime
in
MPN Voice
3 years ago
Anybody take two baby aspirins each day?
Hi all, I’ve been having a few symptoms with PV (cold feet, dizzy spells) despite fairly normal bloods. Currently on aspirin and monthly venesections. I asked about doubling aspirin last appointment and the doctor said not to do that. But today a different doctor suggested I do it without me asking.
Hi all, I’ve been having a few symptoms with PV (cold feet, dizzy spells) despite fairly normal bloods. Currently on aspirin and monthly venesections. I asked about doubling aspirin last appointment and the doctor said not to do that. But today a different doctor suggested I do it without me asking.
Timjonze
in
MPN Voice
2 years ago
Major surgery with PV
I had a
venesection
this week (before the
venesection
my hct was just over 46) and take aspirin daily, and Hydroxycarbimide (18 tabs a week) I’ve told the surgeon and he has been in touch with my haematologist (they both work for the same hospital trust although different sites).
I had a
venesection
this week (before the
venesection
my hct was just over 46) and take aspirin daily, and Hydroxycarbimide (18 tabs a week) I’ve told the surgeon and he has been in touch with my haematologist (they both work for the same hospital trust although different sites).
Gordon335
in
MPN Voice
3 years ago
medichecks results
Hi all ,please would you mind having a look at my medicheck results? I did the test 2nd of december and the medichecks doctor report confirmed I was over medicated (I was at the time taking 112.5 levo and 25 lio t3 cytomel) I have now reduced to 100 levo and kept the same t3 level, as my vitamin did
Hi all ,please would you mind having a look at my medicheck results? I did the test 2nd of december and the medichecks doctor report confirmed I was over medicated (I was at the time taking 112.5 levo and 25 lio t3 cytomel) I have now reduced to 100 levo and kept the same t3 level, as my vitamin did
ianskelly
in
Thyroid UK
2 years ago
Proving Polycythaemia Vera (PV) with/without WHO2016 criteria
My Dr believes I have it, although JAK2 & Exon 12 tests were negative, HGB in 18s, HCT>50s, RBC >5s, low normal EPO around 6-8, bone marrow biopsy “slightly hypercellular” and
venesection
is the current infrequent treatment with checks every 4-8 weeks.
My Dr believes I have it, although JAK2 & Exon 12 tests were negative, HGB in 18s, HCT>50s, RBC >5s, low normal EPO around 6-8, bone marrow biopsy “slightly hypercellular” and
venesection
is the current infrequent treatment with checks every 4-8 weeks.
Tropicaldays
in
MPN Voice
3 years ago
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