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Pegasys .. very slow results
Hi all I’ve been on
Pegasys
since December with very limited results so far , my consultant has been patient with me and increased the dose so now on maximum 180 weekly to see if it does the trick but platelets still high at 970 . Has anyone else experienced
pegasys
not working for them .
Hi all I’ve been on
Pegasys
since December with very limited results so far , my consultant has been patient with me and increased the dose so now on maximum 180 weekly to see if it does the trick but platelets still high at 970 . Has anyone else experienced
pegasys
not working for them .
Suebon
in
MPN Voice
4 years ago
Finally, some good news! Pegasys and Phlebotomies are working!
Doc put me on twice daily baby aspirin, and
Pegasys
at only 25% dose (25ml/45mcg). After 8 weeks, my platelets are back under 400 and alongside the monthly phlebotomies, my Hct is now below 45%. Not much to notice in side-effects either - just some mild and occasional fatigue and dizziness.
Doc put me on twice daily baby aspirin, and
Pegasys
at only 25% dose (25ml/45mcg). After 8 weeks, my platelets are back under 400 and alongside the monthly phlebotomies, my Hct is now below 45%. Not much to notice in side-effects either - just some mild and occasional fatigue and dizziness.
JT_Marlin
in
MPN Voice
4 years ago
Pegasys dosage!
Question is about
Pegasys
dose. Can a patient under treatment with
Pegasys
change the regime from 45 mc/week to 90 mc/2 weeks, with consideration that the patient can tolerate it well? For those using PEG: Do you use it once a week, or in different periods, like per 10 days, per 2 weeks?
Question is about
Pegasys
dose. Can a patient under treatment with
Pegasys
change the regime from 45 mc/week to 90 mc/2 weeks, with consideration that the patient can tolerate it well? For those using PEG: Do you use it once a week, or in different periods, like per 10 days, per 2 weeks?
samiris
in
MPN Voice
5 years ago
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Got my letter too..!
I’m not 100% convinced that well-controlled ET with
Pegasys
really makes me vulnerable (hoping interferon might actually give some protection!) but will follow the advice anyway - it’s going to be a long 12 weeks..!
I’m not 100% convinced that well-controlled ET with
Pegasys
really makes me vulnerable (hoping interferon might actually give some protection!) but will follow the advice anyway - it’s going to be a long 12 weeks..!
AndyT
in
MPN Voice
5 years ago
I have Covid 19 - I’ m worried about taking my Peg medication.
But I have been told
Pegasys
may actually help with Covid 19 as the active substance in
Pegasys
, peginterferon Interferons are natural substances produced by the body that help it fight infections caused by viruses.
But I have been told
Pegasys
may actually help with Covid 19 as the active substance in
Pegasys
, peginterferon Interferons are natural substances produced by the body that help it fight infections caused by viruses.
Raphael_UK
in
MPN Voice
5 years ago
Routine bloodwork and Phlebotomy
My doctor has created a standing order for me to continue to get bloodwork every 4 weeks as my
Pegasys
dose increases. And he says if the hematocrit is still elevated I’ll have to continue with monthly phlebotomies as well. He says the risk of thrombosis outweighs the risk of covid-19.
My doctor has created a standing order for me to continue to get bloodwork every 4 weeks as my
Pegasys
dose increases. And he says if the hematocrit is still elevated I’ll have to continue with monthly phlebotomies as well. He says the risk of thrombosis outweighs the risk of covid-19.
JT_Marlin
in
MPN Voice
5 years ago
Coronavirus - vulnerable group confirmation.
The Doctor was clear, according to the government "vulnerable" guidelines: MPNs are a blood cancer and
Pegasys
is immunotherapy. It's been a huge relief to get full clarity - as there are so many mixed messages out there for us.
The Doctor was clear, according to the government "vulnerable" guidelines: MPNs are a blood cancer and
Pegasys
is immunotherapy. It's been a huge relief to get full clarity - as there are so many mixed messages out there for us.
Loubielou
in
MPN Voice
5 years ago
PFO, To close or not to close?
Spoke with the interventional cardiologist today (by phone of course) - he thoroughly reviewed my tests and suggested that I dont close it (if its in fact there) and that I stay on my 2x daily baby aspirin, switch from eliquis (apixaban) to plavix (clopidgrel) and continue the
Pegasys
to fight the PV
Spoke with the interventional cardiologist today (by phone of course) - he thoroughly reviewed my tests and suggested that I dont close it (if its in fact there) and that I stay on my 2x daily baby aspirin, switch from eliquis (apixaban) to plavix (clopidgrel) and continue the
Pegasys
to fight the PV
JT_Marlin
in
MPN Voice
5 years ago
Loss of skin sensation.
I have MPL/ET on
Pegasys
Injections and L/D Aspirin.
I have MPL/ET on
Pegasys
Injections and L/D Aspirin.
Raphael_UK
in
MPN Voice
5 years ago
TYPE 2 Diabetes
I’m taking L/D Aspirin and
Pegasys
.
I’m taking L/D Aspirin and
Pegasys
.
Raphael_UK
in
MPN Voice
5 years ago
Pegasys
I was wondering if anyone else on
pegasys
has been told that in the next 5 years it is stopping being produced worldwide. At my last haematology appt, my nurse warned me of this & that I would need to consider another treatment eventually.
I was wondering if anyone else on
pegasys
has been told that in the next 5 years it is stopping being produced worldwide. At my last haematology appt, my nurse warned me of this & that I would need to consider another treatment eventually.
Beartime
in
MPN Voice
5 years ago
Platelets too low on Pegasys
I was advised by the on call haematologist to leave off
Pegasys
last week, but I had already done the injection. I am having another blood test at the hospital tomorrow (I left off
Pegasys
this week) and have also had another GP one today, which bled MUCH more than usual.
I was advised by the on call haematologist to leave off
Pegasys
last week, but I had already done the injection. I am having another blood test at the hospital tomorrow (I left off
Pegasys
this week) and have also had another GP one today, which bled MUCH more than usual.
Otterfield
in
MPN Voice
5 years ago
Anyone else taking Eliquis? Noticed any side effects?
I'll be starting on
Pegasys
shortly, but curious if anyone else has been on eliquis longer-term and dealt with any side effects?
I'll be starting on
Pegasys
shortly, but curious if anyone else has been on eliquis longer-term and dealt with any side effects?
JT_Marlin
in
MPN Voice
5 years ago
Pegasys travel?
How to travel for long periods with
Pegasys
? How do you keep it cold?
How to travel for long periods with
Pegasys
? How do you keep it cold?
Trli
in
MPN Voice
5 years ago
Pegasys and sore eyes
I have ET and I inject
pegasys
90 fortnightly. The dosage has now been increased to 135. Following this larger dose I experience very sore eyes. This is most intense for 3 or 4 days then eases off gradually. Does anyone else experience this side effect and any tips? Many thanks
I have ET and I inject
pegasys
90 fortnightly. The dosage has now been increased to 135. Following this larger dose I experience very sore eyes. This is most intense for 3 or 4 days then eases off gradually. Does anyone else experience this side effect and any tips? Many thanks
Tintins
in
MPN Voice
5 years ago
Pegasys and Alcohol?
Ive read from many of you the importance of consuming a lot of water while on
pegasys
. Curious for those of you who enjoy(ed) wine or other alcohol how that has or hasnt affected your ability to drink?
Ive read from many of you the importance of consuming a lot of water while on
pegasys
. Curious for those of you who enjoy(ed) wine or other alcohol how that has or hasnt affected your ability to drink?
JT_Marlin
in
MPN Voice
5 years ago
New to Forum
I’m currently on
Pegasys
and blood thinners. My experience since my first hospital appointment has been a bit of an exercise in ‘good news, bad news’ and that’s ongoing. But on the overwhelmingly positive side, I feel well, no symptoms and have great doctors.
I’m currently on
Pegasys
and blood thinners. My experience since my first hospital appointment has been a bit of an exercise in ‘good news, bad news’ and that’s ongoing. But on the overwhelmingly positive side, I feel well, no symptoms and have great doctors.
Mymble
in
MPN Voice
5 years ago
Update
I have tried various treatments - Ruxolitinib, HU and a combination of both but nothing really touched my platelets but since going to the QE in Birmingham I have been taking
Pegasys
45 Mcg weekly and have now achieved complete haematological response 😊 I haven't been feeling well with stomach issues
I have tried various treatments - Ruxolitinib, HU and a combination of both but nothing really touched my platelets but since going to the QE in Birmingham I have been taking
Pegasys
45 Mcg weekly and have now achieved complete haematological response 😊 I haven't been feeling well with stomach issues
Graham7694
in
MPN Voice
5 years ago
Inflammation increased by Peg?
For the past 2 years I was taking
Pegasys
. Inflammation has been present for most of that time, and six months ago, it led to a diagnosis of Rheumatoid Arthritis. Because of this, I am currently being weened from my
Pegasys
, without another plan in place (yet).
For the past 2 years I was taking
Pegasys
. Inflammation has been present for most of that time, and six months ago, it led to a diagnosis of Rheumatoid Arthritis. Because of this, I am currently being weened from my
Pegasys
, without another plan in place (yet).
clevemic
in
MPN Voice
5 years ago
Is anyone else like WTF?
On a twice daily baby aspirin and eliquis, and starting
pegasys
soon. How life altering was this for you - particularly mentally? I consider myself and identify as a super healthy person - I eat well, I work out. Like how do you cope?
On a twice daily baby aspirin and eliquis, and starting
pegasys
soon. How life altering was this for you - particularly mentally? I consider myself and identify as a super healthy person - I eat well, I work out. Like how do you cope?
JT_Marlin
in
MPN Voice
5 years ago
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