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Interferon alfa-2b
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Interferon
I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need time off work? Any helpful hints on how best to manage?
I'm about to start interferon treatment for ET. I need to learn to inject myself. I'm a bit overwhelmed right now and concerned about side effects. Will I need time off work? Any helpful hints on how best to manage?
Otis23
in
MPN Voice
2 months ago
hydroxy/ interferon treatment questions
Hello. I understand that as (currently) incurable disorders PV and ET require long term management via venesection, anti-platelet and cytoreductive drugs. Does this mean constant cytroreductive treatment or can there be breaks if a patient’s bloods respond sufficiently, with a return to the drugs when
Hello. I understand that as (currently) incurable disorders PV and ET require long term management via venesection, anti-platelet and cytoreductive drugs. Does this mean constant cytroreductive treatment or can there be breaks if a patient’s bloods respond sufficiently, with a return to the drugs when
RoundTheWorld
in
MPN Voice
2 months ago
A weighty issue saga
Greetings all, Let me start by saying I have always (for the last 60 years) been conscious of my weight. Even at 72, I am still 'hard wired' into dieting. Before starting hydroxy 3.5 years ago , I was 53kg and 164cm. My ideal range pre-hydroxy was in the 55-57kg range. Today I am 60kg. My hydroxy dose
Greetings all, Let me start by saying I have always (for the last 60 years) been conscious of my weight. Even at 72, I am still 'hard wired' into dieting. Before starting hydroxy 3.5 years ago , I was 53kg and 164cm. My ideal range pre-hydroxy was in the 55-57kg range. Today I am 60kg. My hydroxy dose
Goosebumps52
in
MPN Voice
2 months ago
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New member - Post ET MF (Australia)
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
Hatchie
in
MPN Voice
2 months ago
supplements with essential thrombocyethemia
Hi I am back in hydroxi after suspected added issues to thyroid being on pegulated interferon for a number of years. Just wondered what supplementation anyone would recommend for our conditions - having a terrible time health wise and had burning leg and weakness issues - I had a car accident in February
Hi I am back in hydroxi after suspected added issues to thyroid being on pegulated interferon for a number of years. Just wondered what supplementation anyone would recommend for our conditions - having a terrible time health wise and had burning leg and weakness issues - I had a car accident in February
BeckyDing
in
MPN Voice
2 months ago
Switch from Besremi to Jakafi
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
mfh7
in
MPN Voice
2 months ago
potassium
Hi everyone I don’t post often but always read posts would like to ask your advice over the last few months my potassium has been high and have had a ECG which also showed this I had another ECG last week waiting on results My Gp seems worried and did get a emergency appointment with haematologist
Hi everyone I don’t post often but always read posts would like to ask your advice over the last few months my potassium has been high and have had a ECG which also showed this I had another ECG last week waiting on results My Gp seems worried and did get a emergency appointment with haematologist
Poppy6060
in
MPN Voice
2 months ago
Allele Burden JAK 2
My numbers have been low and getting lower I think that test last year was below 2%. This year they have done another test and the JAK2 mutation result has come back as NEGATIVE, spoke to the specialist nurse, just incase there was an error, but no. They could not find any detectable JAK2 mutation
My numbers have been low and getting lower I think that test last year was below 2%. This year they have done another test and the JAK2 mutation result has come back as NEGATIVE, spoke to the specialist nurse, just incase there was an error, but no. They could not find any detectable JAK2 mutation
shiftzz
in
MPN Voice
2 months ago
9 months on interferon
Hello lovely MPN folk in my laptop! Yesterday I took my 40th injection of interferon and I had the results of my latest blood test today. Since starting, my dose was increased gradually from 45 to 180mcg a week and I've been on the 180mcg since the start of February. My blood counts were showing
Hello lovely MPN folk in my laptop! Yesterday I took my 40th injection of interferon and I had the results of my latest blood test today. Since starting, my dose was increased gradually from 45 to 180mcg a week and I've been on the 180mcg since the start of February. My blood counts were showing
Skyehope
in
MPN Voice
2 months ago
Mithridate trial
Hi everyone I have PV and diagnosed in Dec 2022. I started peg interferon in feb 2023 and I have been on 135mg every week for about 4 months now . My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing
Hi everyone I have PV and diagnosed in Dec 2022. I started peg interferon in feb 2023 and I have been on 135mg every week for about 4 months now . My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing
Blonde25
in
MPN Voice
2 months ago
Depression and peg interferon
hi all, does anyone with a history of depression have experience of using peg interferon? I suffer from what you might call “mild” depression but it’s controlled very effectively these days with citalopram to the extent where I feel fine. Just wondered if anyone in a similar boat has started on the
hi all, does anyone with a history of depression have experience of using peg interferon? I suffer from what you might call “mild” depression but it’s controlled very effectively these days with citalopram to the extent where I feel fine. Just wondered if anyone in a similar boat has started on the
Timjonze
in
MPN Voice
2 months ago
Interferon impact on fertility
Hi everyone, Its been awhile since I've been on here . I would welcome your advice pls. I was diagnosed with Triple Negative-Essential Thrombesemia last year. We are on our fertility journey and was wondering if anyone had any advice on the following questions: 1. Does interferon have any side effects
Hi everyone, Its been awhile since I've been on here . I would welcome your advice pls. I was diagnosed with Triple Negative-Essential Thrombesemia last year. We are on our fertility journey and was wondering if anyone had any advice on the following questions: 1. Does interferon have any side effects
Biscuitlove
in
MPN Voice
2 months ago
Starting dose for pegasys?
Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of masked PV and we are now starting pegasys interferon, as i have had severe depression all my life and still as moderate im worried about the possibility of some risks in mental and other issues. I have always had very thin hair
Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of masked PV and we are now starting pegasys interferon, as i have had severe depression all my life and still as moderate im worried about the possibility of some risks in mental and other issues. I have always had very thin hair
Ninete
in
MPN Voice
3 months ago
ET + Anagrelide
Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now that I'm on Anagrelide (0.5mg twice a day) my platelets are in the 600,000's and I seem to tolerate it ok. However I deal with rapid heartbeats
Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now that I'm on Anagrelide (0.5mg twice a day) my platelets are in the 600,000's and I seem to tolerate it ok. However I deal with rapid heartbeats
Zeppelin11
in
MPN Voice
3 months ago
does anyone out there have histamine intolerance?
hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers crossed, but I also have histamine intolerance amd the absence of Hydroxicarbamide seems to be allowing my mast cells to have a high old time churning out histamine. Has anyone else experienced this? Louise
hi I’ve just changed from hydroxicarbamide to interferon. Seems ok, fingers crossed, but I also have histamine intolerance amd the absence of Hydroxicarbamide seems to be allowing my mast cells to have a high old time churning out histamine. Has anyone else experienced this? Louise
Loubprv
Volunteer
in
MPN Voice
3 months ago
Treatment Change, question
Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to Pegasys. I'm currently on both whilst still taking the hydroxycarbamide I am introducing the interferon at 45mg every 2 weeks, for 8 weeks, I'm
Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to Pegasys. I'm currently on both whilst still taking the hydroxycarbamide I am introducing the interferon at 45mg every 2 weeks, for 8 weeks, I'm
Swim360
in
MPN Voice
3 months ago
Still undecided about Inteferon
As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in the late 700s to 800s . My haematologist says we need to get them under control and as I have declined an increase in HU is keen to get me to
As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in the late 700s to 800s . My haematologist says we need to get them under control and as I have declined an increase in HU is keen to get me to
jodary
in
MPN Voice
3 months ago
Anagrelide success 😃
hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections for 12 months at the highest dose with minimal platelet reduction (1400 - 1180), my count has been over 1000 for 2 years. I have successfully
hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections for 12 months at the highest dose with minimal platelet reduction (1400 - 1180), my count has been over 1000 for 2 years. I have successfully
Maxamber
in
MPN Voice
3 months ago
Travelling with interferon/pegasys
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Sunnyhunny
in
MPN Voice
3 months ago
Interferon and the liver
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
dbus1417
in
MPN Voice
3 months ago
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