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Experiences with
Venesection
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cured of Cirrhosis
after 9years of trips to hospital and
venesection
s I’ve been told today that I do not have Cirrhosis or fatty liver disease. Hurrah. Don’t know who will understand this news.
after 9years of trips to hospital and
venesection
s I’ve been told today that I do not have Cirrhosis or fatty liver disease. Hurrah. Don’t know who will understand this news.
annholly
in
British Liver Trust
2 months ago
Histamine and PV
I seem to have stabilised my haematocrit in the mid 0.4s with a monthly
venesection
and no meds yet.
I seem to have stabilised my haematocrit in the mid 0.4s with a monthly
venesection
and no meds yet.
Omphalos
in
MPN Voice
2 months ago
Update 8.1.5 - Month out from vensection
CBC results from today show a sustained response from the
venesection
I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but in the acceptable range. It seems that my best plan is top stay at 175mcg Besremi with a
venesection
about every 12 months.
CBC results from today show a sustained response from the
venesection
I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but in the acceptable range. It seems that my best plan is top stay at 175mcg Besremi with a
venesection
about every 12 months.
hunter5582
in
MPN Voice
5 months ago
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starting ruxolitinib
So now I have started 10mg ,twice a day of Ruxolitinib plus continuing 90 peginterferon once a fortnight. with a
venesection
booked for tomorrow. I would be grateful to hear from anybody with similar experience. Thank you, and best wishes to all.
So now I have started 10mg ,twice a day of Ruxolitinib plus continuing 90 peginterferon once a fortnight. with a
venesection
booked for tomorrow. I would be grateful to hear from anybody with similar experience. Thank you, and best wishes to all.
caroline_284
in
MPN Voice
2 days ago
hydroxy/ interferon treatment questions
I understand that as (currently) incurable disorders PV and ET require long term management via
venesection
, anti-platelet and cytoreductive drugs.
I understand that as (currently) incurable disorders PV and ET require long term management via
venesection
, anti-platelet and cytoreductive drugs.
RoundTheWorld
in
MPN Voice
5 months ago
Venesection issues, looking for some advice, please.
I’m small, so Consultant Haematologist says I shouldn't need a
venesection
too often. I’m given a “squeeze ball” each time.
I’m small, so Consultant Haematologist says I shouldn't need a
venesection
too often. I’m given a “squeeze ball” each time.
BlackOrangeCat
in
MPN Voice
6 months ago
Interferon with PV JAK2/DNMT3A
❣️ Next step, see if higher dose is having any effect by end July, have another
venesection
if needed (I have PV with high platelets too) and maybe add hydroxy to the mix for a while. ❣️ Otherwise change of drug altogether. Under Guys.
❣️ Next step, see if higher dose is having any effect by end July, have another
venesection
if needed (I have PV with high platelets too) and maybe add hydroxy to the mix for a while. ❣️ Otherwise change of drug altogether. Under Guys.
Fivecatsandcounting
in
MPN Voice
3 months ago
Update 8.1 - post venesection
I followed up on my planned
venesection
on March 26. I had a CBC done today. the results look good. HCT=42.1%, down from 47.3%. The next planned CBC is April 26. We will see how things look then. NEUT came back up a bit, now at 1.30. So low, but acceptable level of neutropenia.
I followed up on my planned
venesection
on March 26. I had a CBC done today. the results look good. HCT=42.1%, down from 47.3%. The next planned CBC is April 26. We will see how things look then. NEUT came back up a bit, now at 1.30. So low, but acceptable level of neutropenia.
hunter5582
in
MPN Voice
6 months ago
Oedema in legs and feet
he has Iron Overload which will soon be managed by
venesection
. The specialist nurses don’t seem to have any solution for managing oedema in someone who can’t take diuretics. His disease in itself tends to limit movement and this swelling has made things worse.
he has Iron Overload which will soon be managed by
venesection
. The specialist nurses don’t seem to have any solution for managing oedema in someone who can’t take diuretics. His disease in itself tends to limit movement and this swelling has made things worse.
Fabrica10
in
British Liver Trust
4 months ago
Mithridate trial
My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing
venesection
every 6 weeks .
My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing
venesection
every 6 weeks .
Blonde25
in
MPN Voice
5 months ago
just started Pegasus
I had
venesection
few times and subsequent blood tests were done too. About a month back specialist recommended me to take Pegasus 45 microgram/.5 mL each for two weeks and change to 90 microgram/.5mL for every two weeks. I have now taken the first 90microgram dosage for the first time.
I had
venesection
few times and subsequent blood tests were done too. About a month back specialist recommended me to take Pegasus 45 microgram/.5 mL each for two weeks and change to 90 microgram/.5mL for every two weeks. I have now taken the first 90microgram dosage for the first time.
Stoosh
in
MPN Voice
1 month ago
JAK2 results
first JAK2 Bloods test my results were 44.65 then a year later around July/Aug 23 had another JAK2 blood test and it had increased to 56.45 hence my decision to start Pegasus in Aug 23 first 45mcg forthnighty then few month ago increased to 45mcg weekly as HCT was 42.9 my target is 43 and I had a
venesection
first JAK2 Bloods test my results were 44.65 then a year later around July/Aug 23 had another JAK2 blood test and it had increased to 56.45 hence my decision to start Pegasus in Aug 23 first 45mcg forthnighty then few month ago increased to 45mcg weekly as HCT was 42.9 my target is 43 and I had a
venesection
Cityreach
in
MPN Voice
3 months ago
Annual check up - anyone good with recipe ideas?!
The haemochromotosis and alcohol combination has caused such significant damage and now he is almost 2 years abstinent and having regular
venesection
treatments all that is left to do is weight.
The haemochromotosis and alcohol combination has caused such significant damage and now he is almost 2 years abstinent and having regular
venesection
treatments all that is left to do is weight.
RugbyMama
in
British Liver Trust
19 days ago
venesection at home?
might anyone please have any experience of a
venesection
at home for a PRV patient unable to access usual clinic in London due to mobility problems (unrelated to PRV) and if so, what company provided this? very many thanks.
might anyone please have any experience of a
venesection
at home for a PRV patient unable to access usual clinic in London due to mobility problems (unrelated to PRV) and if so, what company provided this? very many thanks.
LauraH1982
in
MPN Voice
9 months ago
Ferritin 13 2 degree heart block 11
Hi Everybody I have hemochromatosis and my ferritin is now 13 but no
venesection
for 2 years. I have had heart twinges and chronic constipation. I have been diagnosed with second AV block with pauses up to 7.13 seconds by my 24 hr holter monitor.
Hi Everybody I have hemochromatosis and my ferritin is now 13 but no
venesection
for 2 years. I have had heart twinges and chronic constipation. I have been diagnosed with second AV block with pauses up to 7.13 seconds by my 24 hr holter monitor.
Gladys23
in
Haemochromatosis Society UK
8 months ago
Ventricular Standstills
I have hemochromatosis and ferritin dropped to 14 with no
venesection
for over 2 years. I have now been listed for an urgent pace maker but am worried how a pace maker will deal with 7.13 second pause please? Many thanks for any information Gladys73
I have hemochromatosis and ferritin dropped to 14 with no
venesection
for over 2 years. I have now been listed for an urgent pace maker but am worried how a pace maker will deal with 7.13 second pause please? Many thanks for any information Gladys73
Gladys23
in
British Heart Foundation
8 months ago
starting hydroxy as pathway to Rux
hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and
venesection
. My platelets and white blood cells started shifting so my haem consultant put me on interferon which controlled my blood beautifully.
hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and
venesection
. My platelets and white blood cells started shifting so my haem consultant put me on interferon which controlled my blood beautifully.
Sanga
in
MPN Voice
8 months ago
changing medication
I have PV diagnosed 8 years ago and all good with
venesection
and aspirin only. Until my platelets and white cells started rising. I’ve been on interferon 95mcg for a year but with horrid side effects, however kept my blood in line.
I have PV diagnosed 8 years ago and all good with
venesection
and aspirin only. Until my platelets and white cells started rising. I’ve been on interferon 95mcg for a year but with horrid side effects, however kept my blood in line.
Sanga
in
MPN Voice
9 months ago
newsue
Hi I have had haemochromatosis for 10 years and have always had venesections but now my ferritin is very low 14 and no
venesection
for over a year. Been suffering for constipation for 2 years. Anyone had ferritin drop no blood letting please ?
Hi I have had haemochromatosis for 10 years and have always had venesections but now my ferritin is very low 14 and no
venesection
for over a year. Been suffering for constipation for 2 years. Anyone had ferritin drop no blood letting please ?
Gladys23
in
Haemochromatosis Society UK
11 months ago
Update after guys app
However I had the following happen on my blood test at the beginning of November my hct was 41 I had another blood test on the 29th and it had increased to 48 never known it to jump that much in a short period so I had to have a
venesection
However I had the following happen on my blood test at the beginning of November my hct was 41 I had another blood test on the 29th and it had increased to 48 never known it to jump that much in a short period so I had to have a
venesection
Dottiedot
in
MPN Voice
10 months ago
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