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Pegasys
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Good News Day!
For the first time since starting
Pegasys
my platelets are down to 297 today - bang in the middle of normal range! Nice to share some positive news that may be a boost to anyone struggling with Peg and not seeing results yet 💚
For the first time since starting
Pegasys
my platelets are down to 297 today - bang in the middle of normal range! Nice to share some positive news that may be a boost to anyone struggling with Peg and not seeing results yet 💚
IrishSarah
in
MPN Voice
3 years ago
ET hair loss
Im having so much hair loss … is this because of ET or because of my treatment
pegasys
???
Im having so much hair loss … is this because of ET or because of my treatment
pegasys
???
shiela23
in
MPN Voice
3 years ago
Querying Pegasus dose
I was started on
Pegasys
straight away building up to 90 mcg weekly and as my platelets started falling and then went below 150 it has been reduced to 45mcg weekly.
I was started on
Pegasys
straight away building up to 90 mcg weekly and as my platelets started falling and then went below 150 it has been reduced to 45mcg weekly.
Mymble
in
MPN Voice
3 years ago
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Leaving Pegasys behind
Am only taking 500mg once daily because despite the down sides to
Pegasys
it did keep my blood levels stable. For people starting to take
Pegasys
please be aware that it’s side effects can develop several months down the line, so be vigilant. Stay safe and well.
Am only taking 500mg once daily because despite the down sides to
Pegasys
it did keep my blood levels stable. For people starting to take
Pegasys
please be aware that it’s side effects can develop several months down the line, so be vigilant. Stay safe and well.
Ellipops
in
MPN Voice
3 years ago
Besremi versus Pegasys
The Proud-pv study for Besremi did not include et/pv patients with enlarged spleens while the
Pegasys
study did include enlarged spleen patients. Here in the US we are waiting for Besremi approval,
Pegasys
is already approved.
The Proud-pv study for Besremi did not include et/pv patients with enlarged spleens while the
Pegasys
study did include enlarged spleen patients. Here in the US we are waiting for Besremi approval,
Pegasys
is already approved.
Flynn2107
in
MPN Voice
3 years ago
Tremors Update
Pegasys
can also cause hair loss. I have never experienced that prior to Covid. Mahaloz for letting me vent today. I wish you all well!
Pegasys
can also cause hair loss. I have never experienced that prior to Covid. Mahaloz for letting me vent today. I wish you all well!
blu3yedblonde
in
MPN Voice
3 years ago
Menopause and ET
I’ve been living with ET for about 10 years treated very well with
pegasys
. I am pretty much convinced I’m in the perimenopause and am wanting to find out about use of HRT in women with blood disorders. Does anyone have any experience of this?
I’ve been living with ET for about 10 years treated very well with
pegasys
. I am pretty much convinced I’m in the perimenopause and am wanting to find out about use of HRT in women with blood disorders. Does anyone have any experience of this?
teddy21
in
MPN Voice
3 years ago
Pegasys injections now hurt
Hi all, I have ET and have been injecting
Pegasys
weekly since around March this year. I always choose my abdomen as my thighs are a bit solid and it never used to hurt but the past few times it hurts when the needle pierces the skin.
Hi all, I have ET and have been injecting
Pegasys
weekly since around March this year. I always choose my abdomen as my thighs are a bit solid and it never used to hurt but the past few times it hurts when the needle pierces the skin.
FashionLover
in
MPN Voice
3 years ago
Thanks to the MPN Voice Community Had Empowering Appt with my MPN Specialist
He laid out the three options: 1) continue on HU - up the dosage and try to better manage the SE to see if we can get platelets in range; 2) switch to
Pegasys
; 3) switch to Anagrelide.
He laid out the three options: 1) continue on HU - up the dosage and try to better manage the SE to see if we can get platelets in range; 2) switch to
Pegasys
; 3) switch to Anagrelide.
Solyesh
in
MPN Voice
3 years ago
Effects of Pfizer.
I was on
Pegasys
and then after my first Pfizer injection all my blood counts, haem, whites and platelets dropped dramatically. So my consultant stopped my
Pegasys
. This happened in January and my cc is still all low. My counts have been perfect for years before this happened. Anita Stewart
I was on
Pegasys
and then after my first Pfizer injection all my blood counts, haem, whites and platelets dropped dramatically. So my consultant stopped my
Pegasys
. This happened in January and my cc is still all low. My counts have been perfect for years before this happened. Anita Stewart
Anita53
in
MPN Voice
3 years ago
Reducing Pegasys dose?
I’m currently on 90mcg
Pegasys
weekly and responding well with platelets down to 480 on last count. Because side effects are an issue for me (mostly just soooo tired of feeling tired!)
I’m currently on 90mcg
Pegasys
weekly and responding well with platelets down to 480 on last count. Because side effects are an issue for me (mostly just soooo tired of feeling tired!)
IrishSarah
in
MPN Voice
3 years ago
Pegasys update
Hi all, So the blood results are in and I’ve had my consultation with my specialist nurse. My platelets after one week have dropped from 450 to 253!! I’ve gained at least 2 hours a day but not energy. My WBC have been compromised so I have a reduced immune system. I'm now dropping my 9 anagrelide
Hi all, So the blood results are in and I’ve had my consultation with my specialist nurse. My platelets after one week have dropped from 450 to 253!! I’ve gained at least 2 hours a day but not energy. My WBC have been compromised so I have a reduced immune system. I'm now dropping my 9 anagrelide
Wyebird
in
MPN Voice
3 years ago
More Pegasys Injection Issues
So I have been injecting
pegasys
for 14 weeks for p-vera. I generally follow the instructions and am getting used to doing it.
So I have been injecting
pegasys
for 14 weeks for p-vera. I generally follow the instructions and am getting used to doing it.
gvibes
in
MPN Voice
3 years ago
Pegasys- How long to see results?
I’ve had my 3rd dose of 90mg
Pegasys
(ET JAK2+) and curious to know how long it took others in the same boat to see results? Sarah 💚
I’ve had my 3rd dose of 90mg
Pegasys
(ET JAK2+) and curious to know how long it took others in the same boat to see results? Sarah 💚
IrishSarah
in
MPN Voice
3 years ago
At what point are lowered wbc counts a concern
I have PV and after
pegasys
for 3 months my wbc is now at 2.7 thou/uL (normal range 4.0 to 11.0). I am vaccinated with the Pfizer vaccine. I would just like to pose the question and hear opinions about how people are dealing (would deal) with lower white cell counts and covid risk.
I have PV and after
pegasys
for 3 months my wbc is now at 2.7 thou/uL (normal range 4.0 to 11.0). I am vaccinated with the Pfizer vaccine. I would just like to pose the question and hear opinions about how people are dealing (would deal) with lower white cell counts and covid risk.
gvibes
in
MPN Voice
3 years ago
Anybody on both Pegasys and HU
Is anyone on both
Pegasys
and hydroxyurea at the same time to control their p-vera. The lower dose of
pegasys
has less chance of side effects but may still lower jak2 allele burden. The goal would be to have low doses of both drugs to lower any side effects while still controlling HCT.
Is anyone on both
Pegasys
and hydroxyurea at the same time to control their p-vera. The lower dose of
pegasys
has less chance of side effects but may still lower jak2 allele burden. The goal would be to have low doses of both drugs to lower any side effects while still controlling HCT.
Flynn2107
in
MPN Voice
3 years ago
Update 5.7
Now at 8 weeks out from initiating treatment for PV with
Pegasys
, things continue to go well. I am still not having any adverse effects at 45mcg/1x-week. Platelets are down to 477, the lowest they have been in quite some time. HCT is slowly creeping up, now at 44.2%.
Now at 8 weeks out from initiating treatment for PV with
Pegasys
, things continue to go well. I am still not having any adverse effects at 45mcg/1x-week. Platelets are down to 477, the lowest they have been in quite some time. HCT is slowly creeping up, now at 44.2%.
hunter5582
in
MPN Voice
3 years ago
Advice on bone/joint pain & Pegasys?
I’m guessing it’s related to the
Pegasys
- inflammation perhaps? I’d read antihistamines can help and wondering if any of you lovely people have had a similar experience and if you found any relief? Thanks! S
I’m guessing it’s related to the
Pegasys
- inflammation perhaps? I’d read antihistamines can help and wondering if any of you lovely people have had a similar experience and if you found any relief? Thanks! S
IrishSarah
in
MPN Voice
3 years ago
Help! Possible enlarged spleen?
41 y/o m, PV, JAK2+,
pegasys
90mcg weekly and twice daily baby aspirin - history of MI and stroke Hey all - looking for some insight on some recent mid-back pain that started overnight Wednesday.
41 y/o m, PV, JAK2+,
pegasys
90mcg weekly and twice daily baby aspirin - history of MI and stroke Hey all - looking for some insight on some recent mid-back pain that started overnight Wednesday.
JT_Marlin
in
MPN Voice
3 years ago
new member with p-vera exon 12
Also interested in effects and doses of
pegasys
and balancing with phlebotomies. I haven't done much of this type of communicating and probably doing it wrong. Wish the best to all who are dealing these conditions. regards, gvibe
Also interested in effects and doses of
pegasys
and balancing with phlebotomies. I haven't done much of this type of communicating and probably doing it wrong. Wish the best to all who are dealing these conditions. regards, gvibe
gvibes
in
MPN Voice
3 years ago
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