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Phlebotomy
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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 - 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
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
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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
3 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
How often should we have erythropoietin and LDH checked?
Hi there, When I was seeing my specialist at Vanderbilt, he was checking my Erythropoietin and LDH every 2-3 months. My local Heme/Onc doctor never orders anything but a CBC. I have been off HU since March 11 because it was making me feel horrible and I was supposed to start Besremi which was denied
Hi there, When I was seeing my specialist at Vanderbilt, he was checking my Erythropoietin and LDH every 2-3 months. My local Heme/Onc doctor never orders anything but a CBC. I have been off HU since March 11 because it was making me feel horrible and I was supposed to start Besremi which was denied
Wewo01
in
MPN Voice
2 years ago
Besremi decision time
Last
phlebotomy
was 3/24 which makes it almost 10 weeks since I had one which is unusual as I normally need one every 6-8 weeks. Have a couple (more) questions for those on Besremi; Do you continue with baby aspirin? Do you need to avoid the sun as with Hydroxyruea?
Last
phlebotomy
was 3/24 which makes it almost 10 weeks since I had one which is unusual as I normally need one every 6-8 weeks. Have a couple (more) questions for those on Besremi; Do you continue with baby aspirin? Do you need to avoid the sun as with Hydroxyruea?
wateron
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
3 years ago
What career choice it’s better for me do to condition??
Hello everyone Those anyone know if benign a
phlebotomy
technician is a good idea if I have Raynaud's my fingers are affect I a little bit some of my fingers are calling swollen ??
Hello everyone Those anyone know if benign a
phlebotomy
technician is a good idea if I have Raynaud's my fingers are affect I a little bit some of my fingers are calling swollen ??
Dulce77
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
BESREMi 4th dose
Since my symptoms (awful itching, headaches, visual disturbance) wouldn't go away with aspirin and
phlebotomy
, we started me on Pegasys in 9/2018. We'd gotten to the point that my bloodwork was well within normal range and my symptoms were gone with 45 mcg Pegasys every other week.
Since my symptoms (awful itching, headaches, visual disturbance) wouldn't go away with aspirin and
phlebotomy
, we started me on Pegasys in 9/2018. We'd gotten to the point that my bloodwork was well within normal range and my symptoms were gone with 45 mcg Pegasys every other week.
lynxfluff
in
MPN Voice
3 years ago
Update 6.6
I might opt for a mini-
phlebotomy
(250ml) if the HCT stays too high. Not sure it would work, but could be worth a try. I feel so much better with my iron levels higher, i would be willing to give it a go. If the WBCs come back up, I might also consider a slightly higher Besremi dose (175mcg).
I might opt for a mini-
phlebotomy
(250ml) if the HCT stays too high. Not sure it would work, but could be worth a try. I feel so much better with my iron levels higher, i would be willing to give it a go. If the WBCs come back up, I might also consider a slightly higher Besremi dose (175mcg).
hunter5582
in
MPN Voice
2 years ago
What would expected TSH and T4 be like after 3 months on levo?
Long story cut short: - started on levo on 1/12/21 - tablets now about to run out - GP won't see me for a review appt and a second prescription without a blood test first - no morning
phlebotomy
appts at practice for 3 weeks - managed to get morning bloods by going to a hospital drop in clinic 10 miles
Long story cut short: - started on levo on 1/12/21 - tablets now about to run out - GP won't see me for a review appt and a second prescription without a blood test first - no morning
phlebotomy
appts at practice for 3 weeks - managed to get morning bloods by going to a hospital drop in clinic 10 miles
lauraleeds666
in
Thyroid UK
3 years ago
HCT 38 and feeling great
Hi All, I do hope everyone is doing well. I have been having phlebotomies since January with a goal to keep my hematocrit under 42. Last Monday, my HCT was 38.6 and I have felt the best I have in a long time! Better than my HCT's at 41-42. I don't know if this is coincidence or if my body really prefers
Hi All, I do hope everyone is doing well. I have been having phlebotomies since January with a goal to keep my hematocrit under 42. Last Monday, my HCT was 38.6 and I have felt the best I have in a long time! Better than my HCT's at 41-42. I don't know if this is coincidence or if my body really prefers
Wewo01
in
MPN Voice
3 years ago
Phlebotomy second one tomorrow
I am having my second
phlebotomy
tomorrow. The doctor, not an MPN specialist but a regular heme/onc doc, has order 1000ml withdrawal. My first one was 500ml. I am curious if there is a set protocol? Thank you! Kim
I am having my second
phlebotomy
tomorrow. The doctor, not an MPN specialist but a regular heme/onc doc, has order 1000ml withdrawal. My first one was 500ml. I am curious if there is a set protocol? Thank you! Kim
Wewo01
in
MPN Voice
3 years ago
Polycythaemia Vera.
I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be
phlebotomy
ie bloods taken to reduce my red blood cell count. I had a liver transplant 12 years ago and have enjoyed good health till now :(.
I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be
phlebotomy
ie bloods taken to reduce my red blood cell count. I had a liver transplant 12 years ago and have enjoyed good health till now :(.
plym1uk
in
MPN Voice
3 years ago
Pegasys Copay!
This medication is WORKING for me, keeping my numbers under great control with no
phlebotomy
, and reducing my allele burden significantly with no side effects. Does anyone have any suggestions for copay assistance or resources?
This medication is WORKING for me, keeping my numbers under great control with no
phlebotomy
, and reducing my allele burden significantly with no side effects. Does anyone have any suggestions for copay assistance or resources?
DN515
in
MPN Voice
3 years ago
Should I have been tested for PA before starting loading doses?
I know nothing about
phlebotomy
but I think those are usually for full bloods aren't they? I'm concerned they are just testing my total b12 levels which will be high anyway having been given the loading doses, and are not doing the tests I'm supposed to have for PA.
I know nothing about
phlebotomy
but I think those are usually for full bloods aren't they? I'm concerned they are just testing my total b12 levels which will be high anyway having been given the loading doses, and are not doing the tests I'm supposed to have for PA.
franrose
in
Pernicious Anaemia Society
3 years ago
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