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Interferon alfa-2a
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Need your advice please
For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three years later this has ballooned to 60.3kg, despite my efforts to control any
For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three years later this has ballooned to 60.3kg, despite my efforts to control any
Goosebumps52
in
MPN Voice
5 months ago
Peginterferon alfa-2a
Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one treatment and wow does it suck! I haven't seen anyone else talking about this course of treatment. Is anyone else doing this? I sure could use some
Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one treatment and wow does it suck! I haven't seen anyone else talking about this course of treatment. Is anyone else doing this? I sure could use some
LisaLoveTacos
in
MPN Voice
7 months ago
Peginterferon alfa 2a or Hydroxycarbamide for PV?
My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site, apologies uf this has been asked before.
My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site, apologies uf this has been asked before.
Lyndjs
in
MPN Voice
9 months ago
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Muscle pain
Good morning. I am getting pretty debilitating muscle pain in my core - around my groin and up above. I think maybe these are my rectus abdominis muscles. It’s strange because it has happened before and I don’t’ recall doing anything to cause it. It’s very painful, has lasted days and doesn’t seem to
Good morning. I am getting pretty debilitating muscle pain in my core - around my groin and up above. I think maybe these are my rectus abdominis muscles. It’s strange because it has happened before and I don’t’ recall doing anything to cause it. It’s very painful, has lasted days and doesn’t seem to
Huginn
in
MPN Voice
4 days ago
Interferon and skin
I have been on Interferon for a few years but over the last 2 my skin is suffering, loads of dry and itchy skin, anyone else having similar issues?
I have been on Interferon for a few years but over the last 2 my skin is suffering, loads of dry and itchy skin, anyone else having similar issues?
shiftzz
in
MPN Voice
4 days ago
ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
6 days ago
Interferon with PV JAK2/DNMT3A
I'm waiting to see my latest genetic results of JAK2 ab and also if any changes to DNMT3A. I've been on Interferon (90 and then 135mcg) since beg September last year and I wonder if DNMT3A may be causing interferon resistance. I am curious to see if it's just holding the bloods and mutations where they
I'm waiting to see my latest genetic results of JAK2 ab and also if any changes to DNMT3A. I've been on Interferon (90 and then 135mcg) since beg September last year and I wonder if DNMT3A may be causing interferon resistance. I am curious to see if it's just holding the bloods and mutations where they
Fivecatsandcounting
in
MPN Voice
13 days ago
Advice on blood counts, switch to Besremi
MPN community, If you're willing, I'd very much appreciate your advice on/reactions to the results of my blood counts. As you'll see above, 1) my hematocrit is low at 36.7%, well below the goal of 42%, 2) my white blood count is 4.2, below the goal of 10.0, and 3) and my platelets are at 218, below
MPN community, If you're willing, I'd very much appreciate your advice on/reactions to the results of my blood counts. As you'll see above, 1) my hematocrit is low at 36.7%, well below the goal of 42%, 2) my white blood count is 4.2, below the goal of 10.0, and 3) and my platelets are at 218, below
SouthSideA
in
MPN Voice
14 days ago
injection site-red patches
I changed to Pegasys interferon 5 weeks ago and I seem to be coping with it quite well. I’ve had headaches daily since diagnosed in December 2023, these subsided and for the last 2 weeks I was headache free. However the last few days they have returned. I injected my 5th dose last night and I now have
I changed to Pegasys interferon 5 weeks ago and I seem to be coping with it quite well. I’ve had headaches daily since diagnosed in December 2023, these subsided and for the last 2 weeks I was headache free. However the last few days they have returned. I injected my 5th dose last night and I now have
Greengolfer
in
MPN Voice
15 days ago
Besremi - After Two Years
Hi, all. I've been on Besremi for two years now and wanted to share an update and my experience. It's been a very good experience, so far; and I'm optimistic that Besremi is both controlling my blood counts and modifying disease progression. I'm 62 now. I was diagnosed with PV at age 44 and did nothing
Hi, all. I've been on Besremi for two years now and wanted to share an update and my experience. It's been a very good experience, so far; and I'm optimistic that Besremi is both controlling my blood counts and modifying disease progression. I'm 62 now. I was diagnosed with PV at age 44 and did nothing
GardNerd
in
MPN Voice
16 days ago
Interferon
Hi everyone im on 90mg interferon every second week since Feb this year platelets were 1110 came dwn to 916 quick enough but haven't really moved dwn much since actually they went up again and now they are 876 is this the way for any of ye as it seems fairly slow to me even though my hematologist
Hi everyone im on 90mg interferon every second week since Feb this year platelets were 1110 came dwn to 916 quick enough but haven't really moved dwn much since actually they went up again and now they are 876 is this the way for any of ye as it seems fairly slow to me even though my hematologist
VTAR24
in
MPN Voice
16 days ago
Headaches
I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing ok good and bad days I'm on aisprin and interferon 90 mg every second week does any one suffer from really bad headaches mainly over left eye feels very like sinus but docs are telling me it's all part of ET my platelets
I am 48 years old and was diagnosed with ET a year ago cal r mutation I'm doing ok good and bad days I'm on aisprin and interferon 90 mg every second week does any one suffer from really bad headaches mainly over left eye feels very like sinus but docs are telling me it's all part of ET my platelets
VTAR24
in
MPN Voice
16 days ago
Started Interferon
About two weeks ago I put a post on here about my anxiety around changing my treatment plan from Hydroxy to Peg Interferon. I had been sent the vaccine but not given any specific instruction about how to self inject. I appreciated the advice I was given from others who had trodden this path before
About two weeks ago I put a post on here about my anxiety around changing my treatment plan from Hydroxy to Peg Interferon. I had been sent the vaccine but not given any specific instruction about how to self inject. I appreciated the advice I was given from others who had trodden this path before
Reggieroo
in
MPN Voice
23 days ago
A Bright Note & Travelling with Besremi
This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then store it for 6 days once in Brussels. The Besremi stayed in the Yeti cooler bag with 2 ice-gel packs for over 12 hours with no problem. TSA
This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then store it for 6 days once in Brussels. The Besremi stayed in the Yeti cooler bag with 2 ice-gel packs for over 12 hours with no problem. TSA
hunter5582
in
MPN Voice
27 days ago
Minimising reaction at injection site?
Any top tips for managing localised reaction at interferon injection sites please? (raised red circles, about 4cm wide and itchy). Will dig out baggier clothes and inject higher next time but any other tips about how to minimise local reaction? Also - I'm taking 45mcg from a 90mcg syringe. I use half
Any top tips for managing localised reaction at interferon injection sites please? (raised red circles, about 4cm wide and itchy). Will dig out baggier clothes and inject higher next time but any other tips about how to minimise local reaction? Also - I'm taking 45mcg from a 90mcg syringe. I use half
RoundTheWorld
in
MPN Voice
1 month ago
Polycythemia vera: past, present and future
»There has been remarkable progress in the development of novel therapeutic approaches for patients with polycythemia vera (PV). Historically, therapy goals in PV were to mitigate thrombotic risks and control blood counts and symptoms. There is now increased focus on disease modification through progressive
»There has been remarkable progress in the development of novel therapeutic approaches for patients with polycythemia vera (PV). Historically, therapy goals in PV were to mitigate thrombotic risks and control blood counts and symptoms. There is now increased focus on disease modification through progressive
Manouche
in
MPN Voice
1 month ago
Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
Manouche
in
MPN Voice
1 month ago
should I start interferon?
I’d be grateful for any advice or guidance on starting Interferon for ET CalR mutation. I was diagnosed with ET approximately 12 years ago when I was 57. I took Hydroxycarbamide in increasing doses over an approximate 6 year period when the efficacy of the drug began to wane. I was then prescribed
I’d be grateful for any advice or guidance on starting Interferon for ET CalR mutation. I was diagnosed with ET approximately 12 years ago when I was 57. I took Hydroxycarbamide in increasing doses over an approximate 6 year period when the efficacy of the drug began to wane. I was then prescribed
Reggieroo
in
MPN Voice
1 month ago
What to expect at start of Pegasys?
Hello. A question for those of you with PV on Pegasys Interferon please:- If you had side-effects were they from the first injection or did they emerge later? I know this will be dose / individual dependent (I don't yet know dose or frequency). Trying to work out when best to start with family commitments
Hello. A question for those of you with PV on Pegasys Interferon please:- If you had side-effects were they from the first injection or did they emerge later? I know this will be dose / individual dependent (I don't yet know dose or frequency). Trying to work out when best to start with family commitments
RoundTheWorld
in
MPN Voice
2 months ago
Keeping Pegasys injections cool and monitoring temp
Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and will be travelling by plane soon (yay) and am looking for advice to keep the injections cool. Does anyone use a fridge (or similar) thermometer
Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and will be travelling by plane soon (yay) and am looking for advice to keep the injections cool. Does anyone use a fridge (or similar) thermometer
LeoTravels
in
MPN Voice
2 months ago
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