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Interferon alfa-2a
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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
2 months 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
2 months 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
2 months ago
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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
2 months 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
2 months 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
2 months 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
2 months 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
3 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
3 months ago
Choosing medication for PV/early MF
Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fibrosis on the bone marrow so I have been diagnosed with PV/early MF. My spleen is enlarged but up until very recently my bloods were normal. Now my hematocrit has risen slightly. I had portal and splenic vein thrombosis
Hi Guys, I was diagnosed with PV in January and a BMB showed I have stage 1 Fibrosis on the bone marrow so I have been diagnosed with PV/early MF. My spleen is enlarged but up until very recently my bloods were normal. Now my hematocrit has risen slightly. I had portal and splenic vein thrombosis
DarcyShepp
in
MPN Voice
3 months ago
”low risk” interferon trials
Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment. I’m a 36 y/o female with PV (60% jak2 mutation), otherwise good health. My MPN specialist discussed the latest trials and research being done on “low risk” patients, stating I could
Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment. I’m a 36 y/o female with PV (60% jak2 mutation), otherwise good health. My MPN specialist discussed the latest trials and research being done on “low risk” patients, stating I could
TwinMom88
in
MPN Voice
3 months ago
whiplash pain and interferon
hi everyone I started interferon about 6 weeks ago and apart from a bit of nausea and the odd ache the day after seem ( fingers crossed) to be tolerating it ok. However, we’re on Anglesey with friends ( all 70 ish) and thinking we all feel like spring chickens, we decided to book a rib ride under the
hi everyone I started interferon about 6 weeks ago and apart from a bit of nausea and the odd ache the day after seem ( fingers crossed) to be tolerating it ok. However, we’re on Anglesey with friends ( all 70 ish) and thinking we all feel like spring chickens, we decided to book a rib ride under the
Loubprv
Volunteer
in
MPN Voice
3 months ago
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
3 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
3 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
3 months ago
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
3 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
3 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
3 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
4 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
4 months ago
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