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Experiences with
Phlebotomy
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New to MPN Voice
At that time I was getting a
phlebotomy
about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong to keep HCT strictly below 45. My WBC had climbed to close to 12 as well at that time.
At that time I was getting a
phlebotomy
about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong to keep HCT strictly below 45. My WBC had climbed to close to 12 as well at that time.
Luthorville
in
MPN Voice
3 months ago
HCT Jumped 3%.
I haven't had to have a
phlebotomy
for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs.
I haven't had to have a
phlebotomy
for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs.
russkatt
in
MPN Voice
9 months ago
PV and loss of hair?
My treatment right now is daily aspirin and almost weekly a
phlebotomy
. I've got 12 in 3 months . The last one was early July. My hematocrit is 37% but I also have very low iron right now (which is the intention). Since a few months i lose a lot of hear. Does anyone recognize this?
My treatment right now is daily aspirin and almost weekly a
phlebotomy
. I've got 12 in 3 months . The last one was early July. My hematocrit is 37% but I also have very low iron right now (which is the intention). Since a few months i lose a lot of hear. Does anyone recognize this?
AnPV
in
MPN Voice
9 months ago
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Agios and Alnylam sign agreement for siRNA candidate
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for
phlebotomy
.
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for
phlebotomy
.
Manouche
in
MPN Voice
10 months ago
Update 7.9 = Good News
If the erythrocytosis pushes HCT > 45% again, then we will make a decision to either opt for a
phlebotomy
or try another dose increase to 200mcg. We will base the decision largely on the level of leukopenia I am experiencing.
If the erythrocytosis pushes HCT > 45% again, then we will make a decision to either opt for a
phlebotomy
or try another dose increase to 200mcg. We will base the decision largely on the level of leukopenia I am experiencing.
hunter5582
in
MPN Voice
4 months ago
Update 7.8
If erythrocytosis is a concern at that time, then I would be inclined to opt for a therapeutic
phlebotomy
. While I feel better with my iron levels higher, I do not want to risk too much compromise to my immune system. My next doses would be 12/20, 01/03, 01/17.
If erythrocytosis is a concern at that time, then I would be inclined to opt for a therapeutic
phlebotomy
. While I feel better with my iron levels higher, I do not want to risk too much compromise to my immune system. My next doses would be 12/20, 01/03, 01/17.
hunter5582
in
MPN Voice
5 months ago
Iron Deficiency
I’ve read on the internet that almost everyone with PV is iron deficient at time of diagnosis (hence the low ferritin) and that
phlebotomy
makes the iron deficiency worse. My heam told me I was iron deficient before even starting treatment. Is that true?
I’ve read on the internet that almost everyone with PV is iron deficient at time of diagnosis (hence the low ferritin) and that
phlebotomy
makes the iron deficiency worse. My heam told me I was iron deficient before even starting treatment. Is that true?
Hereforalongtime
in
MPN Voice
10 months ago
new mutations
Had been taking aspirin and monthly
phlebotomy
until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a
phlebotomy
this month but will be starting Besremi mid d June. Anyone else have this mutation?
Had been taking aspirin and monthly
phlebotomy
until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a
phlebotomy
this month but will be starting Besremi mid d June. Anyone else have this mutation?
Teachme85
in
MPN Voice
1 year ago
Besremi Update 15 Months
I assumed I'd need a
phlebotomy
as I hadn't had a CBC for 7 weeks and my Hematocrit was already 40 but it went down 2 points! Almost never happens without
phlebotomy
. Everything dropped with the increased dose.
I assumed I'd need a
phlebotomy
as I hadn't had a CBC for 7 weeks and my Hematocrit was already 40 but it went down 2 points! Almost never happens without
phlebotomy
. Everything dropped with the increased dose.
Elizka
in
MPN Voice
1 year ago
Hormones?
I really think this is a side effect of Besremi and the
phlebotomy
combo. It is just becoming more annoying than anything. Just thought I would ask if anyone else out there has any input. Thanks!
I really think this is a side effect of Besremi and the
phlebotomy
combo. It is just becoming more annoying than anything. Just thought I would ask if anyone else out there has any input. Thanks!
KLCTJC
in
MPN Voice
1 year ago
Potential adverse effects of long-term venesection used to treat PV.
While
phlebotomy
can effectively manage the condition, there are some potential effects of long-term
phlebotomy
to be aware of: Iron deficiency: Frequent
phlebotomy
can lead to iron deficiency over time.
While
phlebotomy
can effectively manage the condition, there are some potential effects of long-term
phlebotomy
to be aware of: Iron deficiency: Frequent
phlebotomy
can lead to iron deficiency over time.
hunter5582
in
MPN Voice
1 year ago
I have PV with no symptoms
I have no side effect from the aspirin or the
phlebotomy
. I currently am being seen by 2 hematologists and 1 MPN specialist from Moffitt in Tampa, Fl. I was also seen by another MPN specialist because he was doing a research study on Resurfimide. He wanted to see me if I was a candidate.
I have no side effect from the aspirin or the
phlebotomy
. I currently am being seen by 2 hematologists and 1 MPN specialist from Moffitt in Tampa, Fl. I was also seen by another MPN specialist because he was doing a research study on Resurfimide. He wanted to see me if I was a candidate.
FlTodd
in
MPN Voice
9 months ago
Started Besremi
I do need a
phlebotomy
and my platelets are still high, but I hope the medication will work over time. No side effects so far too! Hope to hear from members who are benefiting from Besremi, and wish all strength and faith in living with these diseases.
I do need a
phlebotomy
and my platelets are still high, but I hope the medication will work over time. No side effects so far too! Hope to hear from members who are benefiting from Besremi, and wish all strength and faith in living with these diseases.
Pogm
in
MPN Voice
10 months ago
Hematocrit question
Asked my Dr & she approved it Wondering if there would be any concern if the
phlebotomy
would lower my hematocrit to 41 or lower as well as already having low Hbg. Most people know me here but am 76 & just on aspirin &
phlebotomy
.
Asked my Dr & she approved it Wondering if there would be any concern if the
phlebotomy
would lower my hematocrit to 41 or lower as well as already having low Hbg. Most people know me here but am 76 & just on aspirin &
phlebotomy
.
wateron
in
MPN Voice
1 year ago
Anyone else with Jak2 PV have difficulty walking and leg pain?
I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after my blood tests have been abnormal for quite a while. For the past year, I've been on aspirin and Phlebotomies, which have kept my Hematocrit under
I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after my blood tests have been abnormal for quite a while. For the past year, I've been on aspirin and Phlebotomies, which have kept my Hematocrit under
Panda2014
in
MPN Voice
2 days ago
Hydroxyurea and Low White Blood Cell Count
I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been keeping my blood counts stable for a while. Since December 2023, my white blood cell count has been fluctuating, but definitely on a downward trend. Last week it was only 2.2. My doctor is recommending to cut down the Hydroxyurea
I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been keeping my blood counts stable for a while. Since December 2023, my white blood cell count has been fluctuating, but definitely on a downward trend. Last week it was only 2.2. My doctor is recommending to cut down the Hydroxyurea
Sheena2020
in
MPN Voice
3 days ago
Droxia vs Hydrea
I've been treated with Hydroxyurea (hydrea) 500mg for PV since December 2021. Due to stomach issues in March 2023 the HU was decreased to every other day. I did fine on this dosage. My #s stayed pretty much normal & eventually my hemoglobin and hematocrit were actually on the low side of normal so
I've been treated with Hydroxyurea (hydrea) 500mg for PV since December 2021. Due to stomach issues in March 2023 the HU was decreased to every other day. I did fine on this dosage. My #s stayed pretty much normal & eventually my hemoglobin and hematocrit were actually on the low side of normal so
ERei
in
MPN Voice
8 days ago
significant drop in platelets after Covid Shot
Within the next 3 weeks I had my labs drawn for my monthly
phlebotomy
. Since 2016 my platelets have consistently been in the mid 700’s. After receiving the covid shot( that was the only difference in the norm) My platelets dropped to 311.
Within the next 3 weeks I had my labs drawn for my monthly
phlebotomy
. Since 2016 my platelets have consistently been in the mid 700’s. After receiving the covid shot( that was the only difference in the norm) My platelets dropped to 311.
Kids0901
in
MPN Voice
1 year ago
Updated numbers on Besremi...interesting
I've been on Besremi now for about 11 months, although increased extremely slowly. Even more slowly than the 50 mcg biweekly increase. But I've been at 350 mcg for a while now. At my recent specialist visit, my platelets remain good, but I've continued to need phlebotomies with no improvement. Even though
I've been on Besremi now for about 11 months, although increased extremely slowly. Even more slowly than the 50 mcg biweekly increase. But I've been at 350 mcg for a while now. At my recent specialist visit, my platelets remain good, but I've continued to need phlebotomies with no improvement. Even though
Luthorville
in
MPN Voice
28 days ago
PV fatigue
My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed treatments of phlebotomies and Hydroxyurea. My fatigue since diagnosis and treatments starting 2021 is all consuming. I don’t know how to deal or cope
My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed treatments of phlebotomies and Hydroxyurea. My fatigue since diagnosis and treatments starting 2021 is all consuming. I don’t know how to deal or cope
CherokeeBlue
in
MPN Voice
2 months ago
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