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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
9 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
2 months 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
2 days ago
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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
3 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
4 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
5 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
5 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
5 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
12 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
3 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
16 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
21 days 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
22 days 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
28 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
28 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
1 month 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
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
2 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
2 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
2 months ago
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