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Phlebotomy
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Besremi - CBC after the 11th dose kept at 175mcg
HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only
phlebotomy
and aspirin for 4 years until Besremi in Feb 2022. Most concerning before Besremi was platelets of 1100. Allele Burden was 70% before Besremi.
HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only
phlebotomy
and aspirin for 4 years until Besremi in Feb 2022. Most concerning before Besremi was platelets of 1100. Allele Burden was 70% before Besremi.
Pat032018
in
MPN Voice
2 years ago
PV is now interfering with my sleep, and sitting on the couch.
Phlebotomy
until 8 days from now. This temperature changing summer has been dreadful. Hope your summer is going better!
Phlebotomy
until 8 days from now. This temperature changing summer has been dreadful. Hope your summer is going better!
lebowski42
in
MPN Voice
2 years ago
Summer cold?
It was 51.3 before the
phlebotomy
and Besremi. 45.6 is the lowest it’s been in a LONG time so I am happy about that!
It was 51.3 before the
phlebotomy
and Besremi. 45.6 is the lowest it’s been in a LONG time so I am happy about that!
Barbiebreath
in
MPN Voice
2 years ago
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3 Peg injections later
I did not get a
phlebotomy
and perhaps I should have. Also, I had quite a few phlebotomies, so my iron is likely low. I realize those symptoms could be related. I read information provided by EPguy, about how INF can cause some pretty severe fatigue in some cases. I am beginning to think I am one.
I did not get a
phlebotomy
and perhaps I should have. Also, I had quite a few phlebotomies, so my iron is likely low. I realize those symptoms could be related. I read information provided by EPguy, about how INF can cause some pretty severe fatigue in some cases. I am beginning to think I am one.
Wewo01
in
MPN Voice
2 years ago
Is a normal lifespan possible for PV patients?
The authors attribute these results to “current standards for attentive management with aspirin, targeted
phlebotomy
and cytoreductive therapy at an academic medical center..[/i] [i]And about that normal longevity issue?
The authors attribute these results to “current standards for attentive management with aspirin, targeted
phlebotomy
and cytoreductive therapy at an academic medical center..[/i] [i]And about that normal longevity issue?
hunter5582
in
MPN Voice
2 years ago
Polycythemia Vera & Menstruation
After my first
phlebotomy
I now only very rarely get headaches. I’ve read that the average amount of blood loss during menstruation is between 30-60ml and much higher with a copper iud. One unit of blood removed for
phlebotomy
is 450ml.
After my first
phlebotomy
I now only very rarely get headaches. I’ve read that the average amount of blood loss during menstruation is between 30-60ml and much higher with a copper iud. One unit of blood removed for
phlebotomy
is 450ml.
Moonflowers_
in
MPN Voice
2 years ago
Update 6.5
If the HCT does not come down, then we will either have to increase the dose again or I will opt for a
phlebotomy
. I feel so much better with my iron levels higher that I do not want to opt for the
phlebotomy
. The concern is that I may not be able to tolerate a higher dose.
If the HCT does not come down, then we will either have to increase the dose again or I will opt for a
phlebotomy
. I feel so much better with my iron levels higher that I do not want to opt for the
phlebotomy
. The concern is that I may not be able to tolerate a higher dose.
hunter5582
in
MPN Voice
2 years ago
Besremi and Phlebotomy
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Elizka
in
MPN Voice
2 years ago
How quickly to increase Besremi dose?
I've taken my first 100mcg dose of Besremi and would like to hear from others how much they increased their dose, and in what time frame. I was prescribed Besremi by my MPN specialist, and will of course consult with him regarding dosage increases. However, I am reading the Besremi titration guide
I've taken my first 100mcg dose of Besremi and would like to hear from others how much they increased their dose, and in what time frame. I was prescribed Besremi by my MPN specialist, and will of course consult with him regarding dosage increases. However, I am reading the Besremi titration guide
PupsBestFriends
in
MPN Voice
2 years ago
Update 6.7
If HCT creeps up, will do a
phlebotomy
if it gets too high. Will likely try a mini-
phlebotomy
first if I need to. Hopefully it will not be needed. I feel much better with my iron levels higher. I did get a bit of good news today.
If HCT creeps up, will do a
phlebotomy
if it gets too high. Will likely try a mini-
phlebotomy
first if I need to. Hopefully it will not be needed. I feel much better with my iron levels higher. I did get a bit of good news today.
hunter5582
in
MPN Voice
2 years ago
T3 introduction help
30 years ago i had a total thyroidectomy due to uncontrollable graves disease. For 30 years 125 t4 replacement worked well. However, about then found i had hemochromotosis and 'required' about 50 phlebotomies. It seemed to compromise my converting of t4 to t3, ultimately resulting in no conversion
30 years ago i had a total thyroidectomy due to uncontrollable graves disease. For 30 years 125 t4 replacement worked well. However, about then found i had hemochromotosis and 'required' about 50 phlebotomies. It seemed to compromise my converting of t4 to t3, ultimately resulting in no conversion
rouser
in
Thyroid UK
2 years ago
Finally, my first Pegasys injection!
Since January, I have only been on aspirin and
phlebotomy
. By the beginning of May, my HCT was at 38 and I was feeling better. As of this past Tuesday, my HCT was 40.9. It has been 6 weeks since my last
phlebotomy
! Previously, I needed one every 2nd to 3rd week.
Since January, I have only been on aspirin and
phlebotomy
. By the beginning of May, my HCT was at 38 and I was feeling better. As of this past Tuesday, my HCT was 40.9. It has been 6 weeks since my last
phlebotomy
! Previously, I needed one every 2nd to 3rd week.
Wewo01
in
MPN Voice
2 years ago
Considering Besremi
I am just being treated with aspirin (81 mg, once a day) and
phlebotomy
. I usually need
phlebotomy
every 6-8 weeks to keep hematocrit under 45, currently 41.5 after last
phlebotomy
with platelets at 645, WBC 11.3, RBC 5.45.
I am just being treated with aspirin (81 mg, once a day) and
phlebotomy
. I usually need
phlebotomy
every 6-8 weeks to keep hematocrit under 45, currently 41.5 after last
phlebotomy
with platelets at 645, WBC 11.3, RBC 5.45.
wateron
in
MPN Voice
2 years ago
Please help! RLS is very bad, also have leukemia, hemochromatosis and severely low immune globulins. Never heard of augmentation till read
Hi RLS community, I just joined. I have had RLS for 23 years but it has been fairly successfully treated with Mirapex although I have been on the max dose for a couple of years. I have been focusing on my other problems and not the RLS because as long as I took the pills by 7pm I could go to bed.
Hi RLS community, I just joined. I have had RLS for 23 years but it has been fairly successfully treated with Mirapex although I have been on the max dose for a couple of years. I have been focusing on my other problems and not the RLS because as long as I took the pills by 7pm I could go to bed.
maggiesgrandmom
in
Restless Legs Syndrome
2 years ago
Exhaustion has me flattened…
I have had phlebotomies since January. I got a break from May to June from them. Had another in July and one in August where they took 600ml. My Dr increased Peg to weekly injections of 45mcg 3 weeks ago, maybe 4. I am very breathless and my heart races if I do anything but sit. My local Dr would not
I have had phlebotomies since January. I got a break from May to June from them. Had another in July and one in August where they took 600ml. My Dr increased Peg to weekly injections of 45mcg 3 weeks ago, maybe 4. I am very breathless and my heart races if I do anything but sit. My local Dr would not
Wewo01
in
MPN Voice
2 years ago
20 year mystery continues
Abstract A 20-year-old woman presented with polycythemia vera and was treated with
phlebotomy
alone for eleven years, following which all clinical manifestations of the disease disappeared.
Abstract A 20-year-old woman presented with polycythemia vera and was treated with
phlebotomy
alone for eleven years, following which all clinical manifestations of the disease disappeared.
Chaucer89
in
MPN Voice
2 years ago
Besremi - CBC after the 9th dose at 175 mcg (25mcg lower than previous); no CBC test after the 8th dose
HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only
phlebotomy
and aspirin for 4 years until Besremi in Feb 2022. Most concerning before Besremi was platelets of 1100. Allele Burden was 70% before Besremi.
HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropoeitin; I am now 64 years old; Only
phlebotomy
and aspirin for 4 years until Besremi in Feb 2022. Most concerning before Besremi was platelets of 1100. Allele Burden was 70% before Besremi.
Pat032018
in
MPN Voice
2 years ago
Has anyone tried alternate anti-inflammatory agents for MPNs?
Hello everyone, I haven't posted in a while as I've been working on my mindfullness and trying not to worry so much about my MPN. Long story short: I've been thinking about how MPNs cause inflammation and seem to also be driven by inflammation. I have a form of arthritis in my hands called Erosive
Hello everyone, I haven't posted in a while as I've been working on my mindfullness and trying not to worry so much about my MPN. Long story short: I've been thinking about how MPNs cause inflammation and seem to also be driven by inflammation. I have a form of arthritis in my hands called Erosive
Lena70
in
MPN Voice
2 years ago
Besremi 1 yr update
So far the experience has been very positive with no adverse effects from Besremi and no PV symptoms other than my HCT, which in the last 6 months has started to creep up to 47 every couple of months necessitating a
phlebotomy
. All my other blood counts are within the normal range.
So far the experience has been very positive with no adverse effects from Besremi and no PV symptoms other than my HCT, which in the last 6 months has started to creep up to 47 every couple of months necessitating a
phlebotomy
. All my other blood counts are within the normal range.
JohnSC
in
MPN Voice
2 years ago
First Hematologist visit
Should I get the
phlebotomy
done? Do you think its ET? Is there anything I can do to lower my platelet count? And I think I am considered low risk so Is there nothing to be done but to monitor my CBCs?
Should I get the
phlebotomy
done? Do you think its ET? Is there anything I can do to lower my platelet count? And I think I am considered low risk so Is there nothing to be done but to monitor my CBCs?
Keanu808
in
MPN Voice
2 years ago
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