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Pegasys
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Guidance on % Allele Burden test
I hope you’re all happy and and feeling reasonably well 💚 I’m about to restart
pegasys
after a 1 year break and it’s reignited my niggling desire to know my MAB % I’ve no doubt we’ll take this post down a rabbit hole discussion about all sorts (as our community of smart cookies tends to do 😂) BUT
I hope you’re all happy and and feeling reasonably well 💚 I’m about to restart
pegasys
after a 1 year break and it’s reignited my niggling desire to know my MAB % I’ve no doubt we’ll take this post down a rabbit hole discussion about all sorts (as our community of smart cookies tends to do 😂) BUT
IrishSarah
in
MPN Voice
1 year ago
Precautions while on Hydrea
Was on
Pegasys
for four years prior until it seemed to have either caused or greatly aggravated an intense neuropathy that has left me with weakness in my feet. Thanks
Was on
Pegasys
for four years prior until it seemed to have either caused or greatly aggravated an intense neuropathy that has left me with weakness in my feet. Thanks
George1976
in
MPN Voice
1 year ago
Travel cooler for Pegasys
Bought this little trinket for traveling with refrigeration-required medication (
Pegasys
). Thought I'd share the details. Keeps cooling for about 48 hrs. 4 All Family medicine cooler. ~$40 USD
Bought this little trinket for traveling with refrigeration-required medication (
Pegasys
). Thought I'd share the details. Keeps cooling for about 48 hrs. 4 All Family medicine cooler. ~$40 USD
Emmyroos
in
MPN Voice
1 year ago
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Could Pegasys cause hair thinning?
I have been on 45mg of
Pegasys
weekly since then. I have noticed just recently that my hair appears to be getting thinner and shedding. Wonder if this is a side effect or my age!! 65. Thanks
I have been on 45mg of
Pegasys
weekly since then. I have noticed just recently that my hair appears to be getting thinner and shedding. Wonder if this is a side effect or my age!! 65. Thanks
Robeets_33
in
MPN Voice
1 year ago
Pegasys
Hi is anyone out there taking
Pegasys
(active ingredient peginterferon alfa-2a)? I have been Hydrea, (hydroxicarbomide) and my onc wants me to inject with Peg to get the platelets down.
Hi is anyone out there taking
Pegasys
(active ingredient peginterferon alfa-2a)? I have been Hydrea, (hydroxicarbomide) and my onc wants me to inject with Peg to get the platelets down.
jcowboy
in
MPN Voice
2 years ago
Itchy patches
Since jabbing myself with
Pegasys
interferon alfa2a for CALR +ET diagnosis, I've noticed the appearance of several small itchy patches on my abdomen and back. The ones on the abdomen are not on the site of the jab.
Since jabbing myself with
Pegasys
interferon alfa2a for CALR +ET diagnosis, I've noticed the appearance of several small itchy patches on my abdomen and back. The ones on the abdomen are not on the site of the jab.
gilded
in
MPN Voice
1 year ago
Interesting Presentation by Dr Silver re long term survival on Interferons
I’ll ask my Hems next appointment, I have JAK2 and TET2 (which reduces
Pegasys
efficacy) so always on the look out for something that might combat the ‘inflammatory blockage’ caused by TET2.
I’ll ask my Hems next appointment, I have JAK2 and TET2 (which reduces
Pegasys
efficacy) so always on the look out for something that might combat the ‘inflammatory blockage’ caused by TET2.
Paul123456
in
MPN Voice
1 year ago
Pegasys dosage question
My oncologist does not have a lot of experience with
Pegasys
and there are no MPN specialists here in Hawaii. My oncologist is very willing to work with me and has consulted with people more experienced with
Pegasys
than he is.
My oncologist does not have a lot of experience with
Pegasys
and there are no MPN specialists here in Hawaii. My oncologist is very willing to work with me and has consulted with people more experienced with
Pegasys
than he is.
Island-Lady
in
MPN Voice
2 years ago
2nd dose of interferon
These symptoms are not uncommon apparently for
Pegasys
interferon but apart from paracetamol any other suggestions would be most helpful. Adiewon
These symptoms are not uncommon apparently for
Pegasys
interferon but apart from paracetamol any other suggestions would be most helpful. Adiewon
Hidden
in
MPN Voice
2 years ago
Update 7.1 - Very Good News
VAF history 03/20/19 = 25% 09/28/20 = 26% 10/23/20 = 29% 05/19/21 = 38% - Start
Pegasys
– switch to Besremi 02/02/22 12/02/22 = 09% This represents a reduction of 29% in just 18.5 months on low doses of interferons.
VAF history 03/20/19 = 25% 09/28/20 = 26% 10/23/20 = 29% 05/19/21 = 38% - Start
Pegasys
– switch to Besremi 02/02/22 12/02/22 = 09% This represents a reduction of 29% in just 18.5 months on low doses of interferons.
hunter5582
in
MPN Voice
1 year ago
Odd symptoms for MPN
I swear it goes away briefly with each
Pegasys
shot. Then it comes back nearly weekly, perfectly timed right before I'm due for the next injection . I find it unusual the way it comes on suddenly then wanes with my MPN treatment timing. No explanation yet from anyone.
I swear it goes away briefly with each
Pegasys
shot. Then it comes back nearly weekly, perfectly timed right before I'm due for the next injection . I find it unusual the way it comes on suddenly then wanes with my MPN treatment timing. No explanation yet from anyone.
Emmyroos
in
MPN Voice
1 year ago
Besremi and kidney function
Started taking Hydrea right away and last year started
pegasys
. My counts were well controlled but some side effects. I’ve just started besremi but have been concerned about my kidneys (GFR now 45, creatinine 1.22) Anyone out there in PV world had this issue with besremi?
Started taking Hydrea right away and last year started
pegasys
. My counts were well controlled but some side effects. I’ve just started besremi but have been concerned about my kidneys (GFR now 45, creatinine 1.22) Anyone out there in PV world had this issue with besremi?
P1pp1r
in
MPN Voice
2 years ago
ET Jak 2+ Pegasys working well but ...
I've been on
Pegasys
for about 18 months platelets were initially 530 I started on 45mcg weekly. Went up to 60mcg weekly then up to 90mcg but I didn't get on well with that amount so back to 60mcg.
I've been on
Pegasys
for about 18 months platelets were initially 530 I started on 45mcg weekly. Went up to 60mcg weekly then up to 90mcg but I didn't get on well with that amount so back to 60mcg.
Izzys-Mum
in
MPN Voice
2 years ago
Update appointment
Hi all, Been on 90mg
pegasys
interferon alpha 4 weeks now ,no side effects apart from a little cold tired after I've inject myself,after few days a do feel good in myself,my tinglings are still here in my feet not such much in my hands comes and goes,still get slightly headaches which I take paracetamols
Hi all, Been on 90mg
pegasys
interferon alpha 4 weeks now ,no side effects apart from a little cold tired after I've inject myself,after few days a do feel good in myself,my tinglings are still here in my feet not such much in my hands comes and goes,still get slightly headaches which I take paracetamols
Jody00
in
MPN Voice
1 year ago
JAK2 Allele Burden On Pegasys
Not sure what my next steps are, but options are (1) combo therapy with rux/Jakafi, (2) remain on 135 for the time being to see if I make any headway, or (3) try to increase the
pegasys
dose even more.
Not sure what my next steps are, but options are (1) combo therapy with rux/Jakafi, (2) remain on 135 for the time being to see if I make any headway, or (3) try to increase the
pegasys
dose even more.
Snook37
in
MPN Voice
2 years ago
Feedback from Haematologist
Pegasys
is working as platelets are 267. She told me that Peg is not associated with pre diabetes but I thought I’d read that there is a danger of developing diabetes while on it. Can anyone shed any light on this or has anyone had a similar experience?
Pegasys
is working as platelets are 267. She told me that Peg is not associated with pre diabetes but I thought I’d read that there is a danger of developing diabetes while on it. Can anyone shed any light on this or has anyone had a similar experience?
hall2
in
MPN Voice
2 years ago
pegasys interferon injections & flu jab
Hello there, Just need some advice. I've been taking my interferon injections every Tues eve for a few months & am due a flu jab. I would imagine it's not good to have it same day as my injections.So should leave it for a few days?... ie:interferon injections Tue evening & flu jab on a friday?
Hello there, Just need some advice. I've been taking my interferon injections every Tues eve for a few months & am due a flu jab. I would imagine it's not good to have it same day as my injections.So should leave it for a few days?... ie:interferon injections Tue evening & flu jab on a friday?
keviekev
in
MPN Voice
2 years ago
Allele burden shock
Glad to be starting
Pegasys
and hoping to be able to stay on it, since I suffer from cutaneous sarcoidosis (an inflammatory condition) and alpha interferon may make it worse. Fingers crossed. If I can be on
Pegasys
, the plan is to test again for allele burden after at least six months.
Glad to be starting
Pegasys
and hoping to be able to stay on it, since I suffer from cutaneous sarcoidosis (an inflammatory condition) and alpha interferon may make it worse. Fingers crossed. If I can be on
Pegasys
, the plan is to test again for allele burden after at least six months.
Aldebaran25
in
MPN Voice
2 years ago
Why do we use IFN-α vs IFN-β? Might IFN-β be preferred?
The novel rIFN-a2b Besremi seems to be less toxic and perhaps also more effective than treatment with
Pegasys
, which is the only alternative today.
The novel rIFN-a2b Besremi seems to be less toxic and perhaps also more effective than treatment with
Pegasys
, which is the only alternative today.
EPguy
in
MPN Voice
2 years ago
Great article for “the itch”.
I have been on
pegasys
for 6 months. Read this article on Mast Cell Activation it explains so much. I am now trying to follow the food recommendations. https://hoffmancentre.com/treatments/mcas/ I talked to the health food store owner and she recommended a combination of these.
I have been on
pegasys
for 6 months. Read this article on Mast Cell Activation it explains so much. I am now trying to follow the food recommendations. https://hoffmancentre.com/treatments/mcas/ I talked to the health food store owner and she recommended a combination of these.
MAP44
in
MPN Voice
2 years ago
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