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Iron Levels
We have been discussing our treatment options on the forum, including Besremi dose titration and
phlebotomy
. I was using
phlebotomy
-only for a couple of years, until May 2021. The whole point of
phlebotomy
is to make you iron-deficient without anemia.
We have been discussing our treatment options on the forum, including Besremi dose titration and
phlebotomy
. I was using
phlebotomy
-only for a couple of years, until May 2021. The whole point of
phlebotomy
is to make you iron-deficient without anemia.
hunter5582
in
MPN Voice
2 years ago
Besremi shot #7
I stayed at 100 mcg for about a month or more, but increased it a bit to avoid a
phlebotomy
as my iron levels are finally returning. Got CBC today. HCT was down a bit to 41.9 which means I can avoid getting
phlebotomy
...for now. I try to keep it below 42. WBC: 7.0 same as a month ago.
I stayed at 100 mcg for about a month or more, but increased it a bit to avoid a
phlebotomy
as my iron levels are finally returning. Got CBC today. HCT was down a bit to 41.9 which means I can avoid getting
phlebotomy
...for now. I try to keep it below 42. WBC: 7.0 same as a month ago.
Elizka
in
MPN Voice
2 years ago
Robotic Medicine
And, eventually, we might even see such robotic devices being installed in many more locations than currently do
phlebotomy
.
And, eventually, we might even see such robotic devices being installed in many more locations than currently do
phlebotomy
.
helvella
Thyroid UK
in
Thyroid UK
2 years ago
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Besremi - CBC and CMP after the 7th dose kept at 200mcg
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
Questions about Jakafi
However platelets at last
phlebotomy
were 1093 and have been that high for a while. RBC and WBC both high. The manufacturer of Jakafi offers a 30 day trial for those of us who are over income for patient assistance.
However platelets at last
phlebotomy
were 1093 and have been that high for a while. RBC and WBC both high. The manufacturer of Jakafi offers a 30 day trial for those of us who are over income for patient assistance.
Bluetoday1
in
MPN Voice
2 years ago
BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES
Conclusion Long-term Besremi therapy fulfils treatment goals important to patients with PV: a good quality of life as indicated by a low symptom burden and
phlebotomy
requirement, the potential to influence myelofibrosis risk, and better event-free survival versus Best Available Treatment (BAT). » https
Conclusion Long-term Besremi therapy fulfils treatment goals important to patients with PV: a good quality of life as indicated by a low symptom burden and
phlebotomy
requirement, the potential to influence myelofibrosis risk, and better event-free survival versus Best Available Treatment (BAT). » https
Manouche
in
MPN Voice
2 years ago
New member introduction
First I would like to thank everyone who contributes to this forum. I've only been a member for a couple of days, but already appreciate the helpful knowledge conveyed by others. I was diagnosed with polycythemia vera in late 2021 after a blood clot in my small toe led to blood tests ( HCT 62.9, RBC
First I would like to thank everyone who contributes to this forum. I've only been a member for a couple of days, but already appreciate the helpful knowledge conveyed by others. I was diagnosed with polycythemia vera in late 2021 after a blood clot in my small toe led to blood tests ( HCT 62.9, RBC
PupsBestFriends
in
MPN Voice
2 years ago
Need advice on telling hem I need second opinion
I am female, 76, finished 6 weeks
phlebotomy
on 1,000 mg hydroxy and one 81 mg aspirin, dx PV, platelets 1 million right now. I have an appt at Mass Gen Hospital in late June, with MPN specialist. Have not told my hem. I want them to collaborate the way many of you have suggested.
I am female, 76, finished 6 weeks
phlebotomy
on 1,000 mg hydroxy and one 81 mg aspirin, dx PV, platelets 1 million right now. I have an appt at Mass Gen Hospital in late June, with MPN specialist. Have not told my hem. I want them to collaborate the way many of you have suggested.
BrookTownsend375
in
MPN Voice
2 years ago
Polycethmia Vera and tinnitus
I have been diagnosed with PV about 18 months agonand have been having regular phlebotomies to bring down my Haematocrit . Now at about.49. I have ringing in my ears ( tinnitus). Is this common and any suggestions as to how to stop the noise would be most welcome. Thank you
I have been diagnosed with PV about 18 months agonand have been having regular phlebotomies to bring down my Haematocrit . Now at about.49. I have ringing in my ears ( tinnitus). Is this common and any suggestions as to how to stop the noise would be most welcome. Thank you
Paul1214
in
MPN Voice
2 years ago
Remember the trial I inquired about?
It’s a trial for Rusfertide. Here is a little of what they sent me. They called me today too. Its done in Southern Florida and there would be several visits. It is supposed to lower HCT so less phlebotomies are needed. (I think.) To keep iron up- I guess. Ep Guy? Hunter? What can you tell me? The several
It’s a trial for Rusfertide. Here is a little of what they sent me. They called me today too. Its done in Southern Florida and there would be several visits. It is supposed to lower HCT so less phlebotomies are needed. (I think.) To keep iron up- I guess. Ep Guy? Hunter? What can you tell me? The several
Barbiebreath
in
MPN Voice
2 years ago
Besremi - after the 6th dose kept at 200 mcg
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
Feeling Abandoned
I don't really know anybody in this area and I just started
Phlebotomy
Classes. I really feel like giving up on myself. I'm a child abuse survivor and still dealing with trauma from that. I am in therapy but I didn't go to my session this week. I just really could use some encouraging words.
I don't really know anybody in this area and I just started
Phlebotomy
Classes. I really feel like giving up on myself. I'm a child abuse survivor and still dealing with trauma from that. I am in therapy but I didn't go to my session this week. I just really could use some encouraging words.
angieda92
in
Anxiety and Depression Support
2 years ago
Update 6.4
We did discuss having a single
phlebotomy
as an option, but I would prefer to try a Besremi dose increase first. I relayed all of the above to the Biologics (specialty pharmacy) nurse who calls on a regular basis to see how I am doing.
We did discuss having a single
phlebotomy
as an option, but I would prefer to try a Besremi dose increase first. I relayed all of the above to the Biologics (specialty pharmacy) nurse who calls on a regular basis to see how I am doing.
hunter5582
in
MPN Voice
2 years ago
Besremi side effects.
Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a specialist, and I did - Kuykendall at Moffitt in Tampa. I have my intown hematologist who I like and trust completely. She and Kuykendall are in
Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a specialist, and I did - Kuykendall at Moffitt in Tampa. I have my intown hematologist who I like and trust completely. She and Kuykendall are in
TheaterCrazy
in
MPN Voice
2 years ago
Besremi - CBC after the 5th dose kept at 200 mcg
HISTORY: Diagnosed with PV 4 years ago; JAK2 positive with very low erythropeitin; 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 erythropeitin; 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
Post-covid inflammation
I'm on an anticoagulant and have a
phlebotomy
every 4 months or so. My post today is related to post-COVID inflammation. I came down with COVID the week of April 4th -- dry, raspy throat/voice, runny nose, fatigue, more pronounced body aches than I usually have. Some chills, but no real fever.
I'm on an anticoagulant and have a
phlebotomy
every 4 months or so. My post today is related to post-COVID inflammation. I came down with COVID the week of April 4th -- dry, raspy throat/voice, runny nose, fatigue, more pronounced body aches than I usually have. Some chills, but no real fever.
blue_reader
in
MPN Voice
2 years ago
9 weeks on Besremi: Update
Which means, I'll need a
phlebotomy
as I keep it at 42 or lower. I think I'm going to wait a few weeks and see if my HCT drops. I'm starting to see my ferritin increase for the first time in 5 years. It was 13! My nails are growing and not breaking off and I have more energy.
Which means, I'll need a
phlebotomy
as I keep it at 42 or lower. I think I'm going to wait a few weeks and see if my HCT drops. I'm starting to see my ferritin increase for the first time in 5 years. It was 13! My nails are growing and not breaking off and I have more energy.
Elizka
in
MPN Voice
2 years ago
Raising Awareness for Polycythemia Vera is Key in Increasing Overall Survival
We also looked at hydroxyurea, and these are the most common first-line cytoreductive treatments, and compared that to
phlebotomy
only. It did look like the interferon treated patients had an overall survival that was very similar to the matched general population.
We also looked at hydroxyurea, and these are the most common first-line cytoreductive treatments, and compared that to
phlebotomy
only. It did look like the interferon treated patients had an overall survival that was very similar to the matched general population.
Manouche
in
MPN Voice
2 years ago
First Visit With My MPN Specialist!
Oh my goodness! There was no comparison to the level of care I’ve been receiving and what I experienced today. Thank you all so much for encouraging me to see a specialist. Special shout outs to Hunter and EP Guy! I went to UNC Chapel Hill Cancer Hospital. I saw Dr Brandi Reeves. She was amazing
Oh my goodness! There was no comparison to the level of care I’ve been receiving and what I experienced today. Thank you all so much for encouraging me to see a specialist. Special shout outs to Hunter and EP Guy! I went to UNC Chapel Hill Cancer Hospital. I saw Dr Brandi Reeves. She was amazing
Barbiebreath
in
MPN Voice
2 years ago
Ports?
I am having regular
phlebotomy
and do not have the best veins. I am wondering if anyone out there, who is having
phlebotomy
, had a port put in instead of having arm
phlebotomy
and how that is working out for you? I welcome all thoughts/comments about this. Thanks Roberta
I am having regular
phlebotomy
and do not have the best veins. I am wondering if anyone out there, who is having
phlebotomy
, had a port put in instead of having arm
phlebotomy
and how that is working out for you? I welcome all thoughts/comments about this. Thanks Roberta
Bluetoday1
in
MPN Voice
2 years ago
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