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Experiences with
Interferon beta-1b
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Flu jab and pneumonia
Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yesterday morning I went for my flu jab and was told I need pneumonia jab too. So had two at the same time. Felt fine till late afternoon then I started feel achy etc. Could not sleep all night and this morning have fever and
Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yesterday morning I went for my flu jab and was told I need pneumonia jab too. So had two at the same time. Felt fine till late afternoon then I started feel achy etc. Could not sleep all night and this morning have fever and
Elab
in
MPN Voice
6 years ago
Milburn - Information on Radioactive Phosphate P32
I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year suffered leg ulcers. After circulation checks this put down to the prolonged use of Hydrox. Hydrox treatment stopped in April and ulcers started
I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year suffered leg ulcers. After circulation checks this put down to the prolonged use of Hydrox. Hydrox treatment stopped in April and ulcers started
Milburn
in
MPN Voice
6 years ago
My Osteoporosis Journey
I've just realized it may not be so easy for people on the Bone Health forum to find this account which I posted on the PMRGCAuk forum a few months ago. So here it is. This is just copy and paste of an account I wrote to keep track of things for myself. Please note I have no medical training and I
I've just realized it may not be so easy for people on the Bone Health forum to find this account which I posted on the PMRGCAuk forum a few months ago. So here it is. This is just copy and paste of an account I wrote to keep track of things for myself. Please note I have no medical training and I
HeronNS
in
Bone Health and Osteoporosis UK
6 years ago
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"What's New in MS Research" - The Latest from MSAA
Hello! MSAA is launching a new article series today, "What's New in MS Research," featuring updates on current MS-research topics. In this inaugural article, topics covered include: 1. Ibudilast in progressive MS 2. Fingolimod versus interferon beta 1-a in pediatric MS 3. Lifetime sun exposure and associates
Hello! MSAA is launching a new article series today, "What's New in MS Research," featuring updates on current MS-research topics. In this inaugural article, topics covered include: 1. Ibudilast in progressive MS 2. Fingolimod versus interferon beta 1-a in pediatric MS 3. Lifetime sun exposure and associates
MSAA_Staff
in
My MSAA Community
6 years ago
Travel tips - Pegylated Interferon
Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling with interferon? We go away next week and it’ll be the first time we are away on an injection day so feeling really anxious about travelling with it and keeping it cool. My airline suggested I buy a Frio wallet which looks
Hi all. I wonder if anyone has tried Frio cooking travel wallets for travelling with interferon? We go away next week and it’ll be the first time we are away on an injection day so feeling really anxious about travelling with it and keeping it cool. My airline suggested I buy a Frio wallet which looks
LinaZW
in
MPN Voice
6 years ago
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
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
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
I Would Appreciate Some Advice Please?
I already use Foligain shampoo/conditioner and am finding new little hairs growing back, only fine ones but they are there. Today I was reading the reviews for these supplements and they were all practically 5*. Looking at the ingredients they do contain iodine which I know we hypo’s aren’t supposed
I already use Foligain shampoo/conditioner and am finding new little hairs growing back, only fine ones but they are there. Today I was reading the reviews for these supplements and they were all practically 5*. Looking at the ingredients they do contain iodine which I know we hypo’s aren’t supposed
Ellie-Louise
in
Thyroid UK
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
This is sort of obvious
msers, good Monday morning. YOU have a CHRONIC medical illness. Now that we have that clear what are YOU going to do about it? Something or nothing? If YOU pick nothing, then ignore this message it is not for YOU. On the other hand, being YOU and wanting to be in the best possible shape for
msers, good Monday morning. YOU have a CHRONIC medical illness. Now that we have that clear what are YOU going to do about it? Something or nothing? If YOU pick nothing, then ignore this message it is not for YOU. On the other hand, being YOU and wanting to be in the best possible shape for
RoyceNewton
in
My MSAA Community
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
Vitamin D Status in the ATBC study & Cancer Mortality.
New study below [1]. "The Alpha-Tocopherol, Beta-Carotene (ATBC) Lung Cancer Prevention Study was a randomized, double-blind, placebo-controlled, 2 x 2 factorial design, primary prevention trial testing the hypothesis that alpha-tocopherol (50 mg/day) and beta-carotene (20 mg/day) supplements reduce
New study below [1]. "The Alpha-Tocopherol, Beta-Carotene (ATBC) Lung Cancer Prevention Study was a randomized, double-blind, placebo-controlled, 2 x 2 factorial design, primary prevention trial testing the hypothesis that alpha-tocopherol (50 mg/day) and beta-carotene (20 mg/day) supplements reduce
pjoshea13
in
Advanced Prostate Cancer
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
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