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Interferon alfa-2a
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Interferon or not???
HI all, Im ET triple neg 2 years diagnosed. I initially tried Anagrelide but suffered side effects and it made little difference to my platelet level. So went on to Hyroxy, which works well for the platelets if I take 1000 daily. However, I have had nausea daily for 2 years, always have mouth ulcers,
HI all, Im ET triple neg 2 years diagnosed. I initially tried Anagrelide but suffered side effects and it made little difference to my platelet level. So went on to Hyroxy, which works well for the platelets if I take 1000 daily. However, I have had nausea daily for 2 years, always have mouth ulcers,
SuET2017
in
MPN Voice
6 years ago
Pegasys
Hi all. I have been on Interferon alpha injections (anything between 2 and 5 days a week) for the last 8 years. I am going to be changed to pegasys ( supply issue with the interferon). How has everyone else found pegasys? I do get flu like symptoms with interferon but as I take it at night it’s fairly
Hi all. I have been on Interferon alpha injections (anything between 2 and 5 days a week) for the last 8 years. I am going to be changed to pegasys ( supply issue with the interferon). How has everyone else found pegasys? I do get flu like symptoms with interferon but as I take it at night it’s fairly
teddy21
in
MPN Voice
6 years ago
7 weeks on Low Dose Naltrexone (LDN)
I am on a mission to eliminate the need for Mirapex (Pramipexole). I have been taking it for over 20 years and it has been very effective at controlling RLS even though it took a larger and larger dose to achieve mastery over the “dancing”. When my arms started joining in the Herky Jerky and I was experiencing
I am on a mission to eliminate the need for Mirapex (Pramipexole). I have been taking it for over 20 years and it has been very effective at controlling RLS even though it took a larger and larger dose to achieve mastery over the “dancing”. When my arms started joining in the Herky Jerky and I was experiencing
libraryannie
in
Restless Legs Syndrome
6 years ago
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side effects
It’s been a long year since I was diagnosed with ET + Jak 2 positive and already fought and battled my way through the side effects of Hydroxy, Anagrelide and Interferon. When I started Pegasys four weeks ago, I thought this may be the one. However I started it and I still had not recovered from the
It’s been a long year since I was diagnosed with ET + Jak 2 positive and already fought and battled my way through the side effects of Hydroxy, Anagrelide and Interferon. When I started Pegasys four weeks ago, I thought this may be the one. However I started it and I still had not recovered from the
MaggieMagpie49
in
MPN Voice
6 years ago
Change of diagnosis, previously ET - Now Post ET Myleofibrosis JAK2 Negative, CAL R positive
As of today I have been diagnosed with Post ET Myleofibrosis intermediate Phase 2, JAK 2 Negative, CAL R Positive. The probability is that I was at the Pre Fibrotic stage of MF when I was diagnosed with ET 10 years ago, 2008. It is a very sad day but I am compelled to not let this disorder get the
As of today I have been diagnosed with Post ET Myleofibrosis intermediate Phase 2, JAK 2 Negative, CAL R Positive. The probability is that I was at the Pre Fibrotic stage of MF when I was diagnosed with ET 10 years ago, 2008. It is a very sad day but I am compelled to not let this disorder get the
SP-2008
in
MPN Voice
6 years ago
PV Treatment Options
For me the trickiest part about PV has been deciding optimum treatment plan. The options are: If low risk, venesections and aspirin. Otherwise principle choice is Interferon/Peg or HU with Ruxo a possible alternative for some. The dilemma arises because there is no consensus amongst the experts. Dr Silver
For me the trickiest part about PV has been deciding optimum treatment plan. The options are: If low risk, venesections and aspirin. Otherwise principle choice is Interferon/Peg or HU with Ruxo a possible alternative for some. The dilemma arises because there is no consensus amongst the experts. Dr Silver
Paul123456
in
MPN Voice
6 years ago
Grapefruit and Peg?
Hi everyone I remember reading somewhere that you should avoid grapefruit if you are on Peg Interferon as it can interact with the drug. Anyway, I was out on a leaving do on Friday night on the G&T’s loaded with grapefruit and tonic, having clearly forgot to avoid the luscious fruit and have since been
Hi everyone I remember reading somewhere that you should avoid grapefruit if you are on Peg Interferon as it can interact with the drug. Anyway, I was out on a leaving do on Friday night on the G&T’s loaded with grapefruit and tonic, having clearly forgot to avoid the luscious fruit and have since been
Mackydee123
in
MPN Voice
6 years ago
Measles vaccine live attenuated
Has anyone had this vaccine since dx? My understanding is that MPN patients should avoid. In view of the current outbreak of measles, this is a bit of a concern for those of us who have managed to avoid measles when young. Anyone know what the risks are if we do have the vaccine, especially if on Interferon
Has anyone had this vaccine since dx? My understanding is that MPN patients should avoid. In view of the current outbreak of measles, this is a bit of a concern for those of us who have managed to avoid measles when young. Anyone know what the risks are if we do have the vaccine, especially if on Interferon
Paul123456
in
MPN Voice
6 years ago
Platelets still not reducing
Hi all Thanks for advice so far on this forum. I have now been on peg interferon for 4 months or so. First two weeks on 45 dose then 90 for two weeks and 180 every week since. Unfortunately nothing has changed apart from me being a bit more angry and a bit more down. My platelets are still hovering
Hi all Thanks for advice so far on this forum. I have now been on peg interferon for 4 months or so. First two weeks on 45 dose then 90 for two weeks and 180 every week since. Unfortunately nothing has changed apart from me being a bit more angry and a bit more down. My platelets are still hovering
Joerp
in
MPN Voice
6 years ago
Useful update on Pegasys
Of interest to all of us using Interferons or considering their use. Bottom line is that a subset of users can get significant reduction in progression and remission. There are no obvious reasons why some people get such a good response and others don’t. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421384
Of interest to all of us using Interferons or considering their use. Bottom line is that a subset of users can get significant reduction in progression and remission. There are no obvious reasons why some people get such a good response and others don’t. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421384
Paul123456
in
MPN Voice
6 years ago
it has come to my attention
msers, to just be polite I have been strongly told that I should inform people a little about me. Basically, things that I am 'not" and how I come by my opinions and beliefs. 20 years having travelled this, my ms journey has given me the belief system that I have. I have learned that it can be rather
msers, to just be polite I have been strongly told that I should inform people a little about me. Basically, things that I am 'not" and how I come by my opinions and beliefs. 20 years having travelled this, my ms journey has given me the belief system that I have. I have learned that it can be rather
RoyceNewton
in
My MSAA Community
6 years ago
TAMARIN STUDY now open across the UK in 13 hospitals
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
Mazcd
MPNVoice
in
MPN Voice
6 years ago
None A none B and all of a sudden theirs C
Hi to all that read this....... In 1974 I had a blood transfusion after a knife attack. In the 1980's I thought I would be a good citizen and give blood. Imagine my surprise when I was asked to go to Birmingham Blood Transfusion Unit as they had found a none A none B hep virus which was unknown in
Hi to all that read this....... In 1974 I had a blood transfusion after a knife attack. In the 1980's I thought I would be a good citizen and give blood. Imagine my surprise when I was asked to go to Birmingham Blood Transfusion Unit as they had found a none A none B hep virus which was unknown in
stevita
in
Hepatitis C Trust
6 years ago
Showers and itching
Years ago I was a sufferer, hot showers itch like hell... Now.. Hydro, Interferon, Itch whe I have COLD showers...
Years ago I was a sufferer, hot showers itch like hell... Now.. Hydro, Interferon, Itch whe I have COLD showers...
shiftzz
in
MPN Voice
6 years ago
Disposal of unused Pegasys Interferon
I live in the US, and am discouraged at the wastefulness that the manufacturers of Pegasys Interferon have shown. Each vial holds 180micrograms of medication. Without insurance, this would cost between $1100 and $1400 PER WEEK!!! Fortunately, I pay only $25 per week, or $100 per month, with my insurance
I live in the US, and am discouraged at the wastefulness that the manufacturers of Pegasys Interferon have shown. Each vial holds 180micrograms of medication. Without insurance, this would cost between $1100 and $1400 PER WEEK!!! Fortunately, I pay only $25 per week, or $100 per month, with my insurance
clevemic
in
MPN Voice
6 years ago
Pegasus interferon and chronic sore throat
I've had a horrible sore throat now for 11 days and I'm starting to feel very down about it (probably due to lack of sleep rather than the sore throat!). I've seen my GP who thinks it's just a virus which should resolve in 7 days (I saw him on day 9). Could this be related to taking interferon for PV
I've had a horrible sore throat now for 11 days and I'm starting to feel very down about it (probably due to lack of sleep rather than the sore throat!). I've seen my GP who thinks it's just a virus which should resolve in 7 days (I saw him on day 9). Could this be related to taking interferon for PV
hansyhand
in
MPN Voice
6 years ago
I've had ra for 26 years, now rheumy wants be to take biologic and antiviral very worried,looking for alternatives?
Hello,I haven't posted before, I have been reading everybodys posts , I was diagnosed with RA in 1994,resisted dmards ,but eventually took sulphasalazine which worked brilliantly, then in 2003 had to undergo treatment for hepatitis,with interferon, contraindicated when you have RA, so managed with Brufen
Hello,I haven't posted before, I have been reading everybodys posts , I was diagnosed with RA in 1994,resisted dmards ,but eventually took sulphasalazine which worked brilliantly, then in 2003 had to undergo treatment for hepatitis,with interferon, contraindicated when you have RA, so managed with Brufen
chavaudret
in
NRAS
6 years ago
Grapefruit Juice and Interferon
I've been drinking pink grapefruit juice for sometime and then read the MPN Voice on Interferon which said that it was contra-indicated with Interferon, which I went on to in May. I've stopped drinking it but I'm curious as to why this juice is contra-indicated. Can anyone enlighten me? Thank you
I've been drinking pink grapefruit juice for sometime and then read the MPN Voice on Interferon which said that it was contra-indicated with Interferon, which I went on to in May. I've stopped drinking it but I'm curious as to why this juice is contra-indicated. Can anyone enlighten me? Thank you
AnitaJ
in
MPN Voice
6 years ago
Keeping Interferon cool whilst travelling
Hi all Just wondering if anyone has any tips for travelling with Interferon? I’m travelling to Portugal in a couple of weeks and will need to take 5 syringes - total travel time around 7 hours taking into account airport and transfer time. I was going to buy a small cool bag for hand luggage. Any thing
Hi all Just wondering if anyone has any tips for travelling with Interferon? I’m travelling to Portugal in a couple of weeks and will need to take 5 syringes - total travel time around 7 hours taking into account airport and transfer time. I was going to buy a small cool bag for hand luggage. Any thing
PT99
in
MPN Voice
6 years ago
Hep B treatment
Hi all. I have not been posting for a while. I saw my consultant yesterday. He is puzzled by my situation and will seek 2nd opinion. My liver function tests are good and fibro scan does not show any scaring. He offered to do a biopsy but i declined as i had a very bad experience with it. He has requested
Hi all. I have not been posting for a while. I saw my consultant yesterday. He is puzzled by my situation and will seek 2nd opinion. My liver function tests are good and fibro scan does not show any scaring. He offered to do a biopsy but i declined as i had a very bad experience with it. He has requested
Hidden
in
Hepatitis B Trust
6 years ago
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