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Interferon beta-1b
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3 Oct 2023 Sleep issue solved so far I think
Interferon
beta
1b
and I have the scarring to prove it. The wife likes to tease me about all the lumps in my butt. No soft fat for her to pinch. Ahh well this is life with a chronic incurable disease. I HOPE YOU CAUGHT THAT.There is no cure for this, no matter what somenody says.
Interferon
beta
1b
and I have the scarring to prove it. The wife likes to tease me about all the lumps in my butt. No soft fat for her to pinch. Ahh well this is life with a chronic incurable disease. I HOPE YOU CAUGHT THAT.There is no cure for this, no matter what somenody says.
RoyceNewton
in
My MSAA Community
8 months ago
Multi vitamins - at last some recognition
Hi everyone, I was pleased to see this today - as so many 'authorities' have repeatedly put down the use of multi vitamins as being a waste of money - here is a quite extensive study showing the opposite. I used to see a very highly acclaimed consultant who said exactly the same to me and would test
Hi everyone, I was pleased to see this today - as so many 'authorities' have repeatedly put down the use of multi vitamins as being a waste of money - here is a quite extensive study showing the opposite. I used to see a very highly acclaimed consultant who said exactly the same to me and would test
posthinking01
in
Thyroid UK
28 days ago
Pee problems
Lately my hypochondria has been in over-drive. I have incontinence. That is, when I feel like I'm done , and zip -up, I shortly see fluid has soaked into my denims. I use Myrbetriq, a drug to lessen bladder spasms. It works, that is, when I'm done I don't feel the urge to continue peeing
Lately my hypochondria has been in over-drive. I have incontinence. That is, when I feel like I'm done , and zip -up, I shortly see fluid has soaked into my denims. I use Myrbetriq, a drug to lessen bladder spasms. It works, that is, when I'm done I don't feel the urge to continue peeing
kaypeeoh
in
Cure Parkinson's
2 months ago
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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 days 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 days 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
18 days 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
22 days 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
23 days 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
26 days 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
26 days 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
27 days 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
1 month 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
1 month 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
1 month 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
1 month 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
1 month 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
1 month 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
1 month 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
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