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Polycythemia Vera Management Often Does Not Follow Guidelines
« Overall, the authors said their data suggest physicians are overreliant on
phlebotomy
, even though a relatively low percentage of patients are achieving recommended HCT control and a significant number of patients are experiencing thrombotic events » https://www.ajmc.com/view/polycythemia-vera-management-often-does-not-follow-guidelines
« Overall, the authors said their data suggest physicians are overreliant on
phlebotomy
, even though a relatively low percentage of patients are achieving recommended HCT control and a significant number of patients are experiencing thrombotic events » https://www.ajmc.com/view/polycythemia-vera-management-often-does-not-follow-guidelines
Manouche
in
MPN Voice
1 year ago
Besremi vs hydroxurea
Have been on hydroxurea since March 15 and still needing
phlebotomy
. Doctor suggesting Pegasus or Besremi. Cost is extremely high - $3000/month. I am considering just staying with hydroxurea until such time that something else pops up medically. Anyone else have a similar situation.
Have been on hydroxurea since March 15 and still needing
phlebotomy
. Doctor suggesting Pegasus or Besremi. Cost is extremely high - $3000/month. I am considering just staying with hydroxurea until such time that something else pops up medically. Anyone else have a similar situation.
Teachme85
in
MPN Voice
1 year ago
Polycythemia vera: 2024 update on diagnosis, risk-stratification, and management
Periodic
phlebotomy
, with a hematocrit target of <45%, combined with once- or twice-daily aspirin (81 mg) therapy, absent contraindications, is the backbone of treatment in all patients, regardless of risk category.
Periodic
phlebotomy
, with a hematocrit target of <45%, combined with once- or twice-daily aspirin (81 mg) therapy, absent contraindications, is the backbone of treatment in all patients, regardless of risk category.
Manouche
in
MPN Voice
11 months ago
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Could it be MS?
For the last 11 months, I have been experiencing numbness and tingling in both feet. I have noticed when its cold I feel worse. I also have numbness, tingling and weakness on my left side in my hand and lower arm. I had a MRI in April 2023 with no contrast; both came back normal. My symptoms have
For the last 11 months, I have been experiencing numbness and tingling in both feet. I have noticed when its cold I feel worse. I also have numbness, tingling and weakness on my left side in my hand and lower arm. I had a MRI in April 2023 with no contrast; both came back normal. My symptoms have
brwnbaby
in
My MSAA Community
5 months ago
Awaiting Results
I will say my hemoglobin at the time was 18 and my hematocrit was 52 and I got a
phlebotomy
& 4 weeks later re tested and everything was in the normal range, but feel they will slowly go up overtime. Just ready to get to the bottom of this & start feeling better
I will say my hemoglobin at the time was 18 and my hematocrit was 52 and I got a
phlebotomy
& 4 weeks later re tested and everything was in the normal range, but feel they will slowly go up overtime. Just ready to get to the bottom of this & start feeling better
Nate6546
in
MPN Voice
1 year ago
possible Sjögren Syndrome
I also have an appointment for a
phlebotomy
because my HCT is up to 43.9 and I do feel it with more skin flushing and sweating. I have felt particularly bad this week. I had to call in to work on Monday. I slept all day until 3pm. Then was ready for more sleep at 7.
I also have an appointment for a
phlebotomy
because my HCT is up to 43.9 and I do feel it with more skin flushing and sweating. I have felt particularly bad this week. I had to call in to work on Monday. I slept all day until 3pm. Then was ready for more sleep at 7.
Wewo01
in
MPN Voice
1 year ago
Moving towards disease modification in polycythemia vera
In this review, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered,
phlebotomy
-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately impact the natural
In this review, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered,
phlebotomy
-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately impact the natural
Manouche
in
MPN Voice
8 months ago
What is going on?
I couldn’t see a hematologist for about a month & a half & got worried again my levels would climb & I had to go on a plane for work, so I got another
phlebotomy
after 8 weeks from the first & these are my results from the hematologist that was tested earlier this week and told me that I don’t need to
I couldn’t see a hematologist for about a month & a half & got worried again my levels would climb & I had to go on a plane for work, so I got another
phlebotomy
after 8 weeks from the first & these are my results from the hematologist that was tested earlier this week and told me that I don’t need to
Confusingdisease
in
MPN Voice
1 year ago
Outcome after 4 years of weekly Pegasys injections for PV.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Manouche
in
MPN Voice
7 months ago
Autoimmune issues -- should I try Pegasys?
I read some of the posts here on a daily basis, but don't post very often -- mainly due to lack of time since I'm working full-time and trying to manage my various conditions. My bio provides the details. One day I hope to be able to participate more fully! I currently manage my PV with an anti-coagulant
I read some of the posts here on a daily basis, but don't post very often -- mainly due to lack of time since I'm working full-time and trying to manage my various conditions. My bio provides the details. One day I hope to be able to participate more fully! I currently manage my PV with an anti-coagulant
blue_reader
in
MPN Voice
7 months ago
Moving toward disease modification in polycythemia vera
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered,
phlebotomy
-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered,
phlebotomy
-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
Manouche
in
MPN Voice
6 months ago
GP practice have dug themselves a hole they're going to find hard to get out of...ALL comments & thoughts WELCOME re this...
I even tried last night to see if I could book another NHS
phlebotomy
appointment any time soon, as I'm due to have [free] replacement Blue Horizon ones (Ferritin, Folate and Cortisol) from the specimens that had haemolysed and had decided to order an FBC from them to send at the same time
and
I even tried last night to see if I could book another NHS
phlebotomy
appointment any time soon, as I'm due to have [free] replacement Blue Horizon ones (Ferritin, Folate and Cortisol) from the specimens that had haemolysed and had decided to order an FBC from them to send at the same time
and
PRJ20
in
Thyroid UK
10 months ago
Besremi Side Effects
Past 42 hct I need a
phlebotomy
, as I had a TIA when I was at 43. I want to give Besremi a chance but I am just having a terrible time with the headaches. This week's dose will be 300. Then, I see my oncologist next week. Has anyone had bad headaches while on Besremi?
Past 42 hct I need a
phlebotomy
, as I had a TIA when I was at 43. I want to give Besremi a chance but I am just having a terrible time with the headaches. This week's dose will be 300. Then, I see my oncologist next week. Has anyone had bad headaches while on Besremi?
Artelu
in
MPN Voice
1 year ago
Thank you!
We will be searching for a potential secondary cause of the high RBC while continuing to monitor and have
phlebotomy
to control the numbers. Thank you so much for helping me find a doctor I know I can trust!
We will be searching for a potential secondary cause of the high RBC while continuing to monitor and have
phlebotomy
to control the numbers. Thank you so much for helping me find a doctor I know I can trust!
Hidden
in
MPN Voice
1 year ago
Iron deficiency anemia and increased A1C levels
Have those of you who receive
phlebotomy
for PV experienced elevated A1C levels? I get phlebotomies ever couple of weeks, which as expected, has caused me to be iron deficient and a bit anemic (HGB 11.1, Ferritin <3 ng/mL, Iron 29, Transferrin 6%, UIBC 434, and IBC 463).
Have those of you who receive
phlebotomy
for PV experienced elevated A1C levels? I get phlebotomies ever couple of weeks, which as expected, has caused me to be iron deficient and a bit anemic (HGB 11.1, Ferritin <3 ng/mL, Iron 29, Transferrin 6%, UIBC 434, and IBC 463).
LIGEBA
in
MPN Voice
1 year ago
Variations in Patient Response to interferons
All other labs have improved on Besremi but still requiring
phlebotomy
about every 10 weeks due to rises in hct. I asked what she is seeing from other patients on Besremi in terms of hct control. Interestingly she said that most women respond much better than men on interferons .
All other labs have improved on Besremi but still requiring
phlebotomy
about every 10 weeks due to rises in hct. I asked what she is seeing from other patients on Besremi in terms of hct control. Interestingly she said that most women respond much better than men on interferons .
mfh7
in
MPN Voice
1 year ago
Introduction and question
Her treatment has been
phlebotomy
along with the 325mg aspirin she was on anyway from the stroke and she was doing well only needing to go in every couple of months to have the draws.
Her treatment has been
phlebotomy
along with the 325mg aspirin she was on anyway from the stroke and she was doing well only needing to go in every couple of months to have the draws.
onlineallthetime
in
MPN Voice
1 year ago
Update and few questions because i have no reliable sources
I told this to my hematologist who further ruled out other causes of elevated hb and put me on wait and watch and advice
phlebotomy
. It didn't improve my itching at all My question is do any senior pv patient who have not progressed yet have symptoms?
I told this to my hematologist who further ruled out other causes of elevated hb and put me on wait and watch and advice
phlebotomy
. It didn't improve my itching at all My question is do any senior pv patient who have not progressed yet have symptoms?
Xuzy
in
MPN Voice
1 year ago
MRI and injuries
I'm Dx with PV jak2 and have been on low dose aspirin 2x daily/phlebotomies every 3 months or so for the last 20 years. My question has to do with inflammation and seemingly lengthy time it takes to heal when injured. I've been dealing with a lingering glute muscle injury obtained during golfing for
I'm Dx with PV jak2 and have been on low dose aspirin 2x daily/phlebotomies every 3 months or so for the last 20 years. My question has to do with inflammation and seemingly lengthy time it takes to heal when injured. I've been dealing with a lingering glute muscle injury obtained during golfing for
ritaandscooter1
in
MPN Voice
10 months ago
Mylo Fibrosis, et al
Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years ago, after dealing with Polycythemia Vera (PV) for 25+ years (I'm 66 years old). The PV regimen was inclusive of Phlebotomies, meds such as Agrilyn
Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years ago, after dealing with Polycythemia Vera (PV) for 25+ years (I'm 66 years old). The PV regimen was inclusive of Phlebotomies, meds such as Agrilyn
luvinretirement
in
MPN Voice
10 months ago
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