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Experiences with
Interferon alfa-2a
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Do you see the possibilities around "YOU"?
Do "YOU" see all the possibilities around "YOU? Seriously do "YOU"? Long long ago, Okay twenty years ago, when I first started my Relapsing Remitting ms(RRms) journey. I had one Disease Modifying Therapy (DMT) available for me to take. Interferon Beta 1b Betaseron or Betaferon depending on where"YOU
Do "YOU" see all the possibilities around "YOU? Seriously do "YOU"? Long long ago, Okay twenty years ago, when I first started my Relapsing Remitting ms(RRms) journey. I had one Disease Modifying Therapy (DMT) available for me to take. Interferon Beta 1b Betaseron or Betaferon depending on where"YOU
RoyceNewton
in
My MSAA Community
5 years ago
HU vs Pegalated Interferon?
Hi Everyone. I'm 35 and have recently been diagnosed JAK2 positive ET. I'm currently on 1500 HU and aspirin daily. It's making me feel pretty rubbish. I would like to talk to my Haematologist about changing to Pegalated Interferon. Can anyone tell me their experiences with pros and cons of both. Thanks
Hi Everyone. I'm 35 and have recently been diagnosed JAK2 positive ET. I'm currently on 1500 HU and aspirin daily. It's making me feel pretty rubbish. I would like to talk to my Haematologist about changing to Pegalated Interferon. Can anyone tell me their experiences with pros and cons of both. Thanks
Artelou
in
MPN Voice
5 years ago
Pegasys Interferon
Hi Just a wee update - still got MF, still coping 'not too bad' - in fact I'm doing better than that as a result of changing medication to Pegasys from Hydroxy. I had suffered incredible fatigue with the Hydroxy and the platelets hadn't really come down as much as the Haem expected. I have found it easy
Hi Just a wee update - still got MF, still coping 'not too bad' - in fact I'm doing better than that as a result of changing medication to Pegasys from Hydroxy. I had suffered incredible fatigue with the Hydroxy and the platelets hadn't really come down as much as the Haem expected. I have found it easy
Not2bad
in
MPN Voice
5 years ago
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Tamarin study update and a new study now recruiting
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Diagnosed with ET
Hi , Feeling very nervous about writing this as never done anything like this before . I am 45 and was diagnosed with ET last June struggling to comes to terms with it . At the moment I am on aspirin . I visited my hematologist last week and my bloods were 1200 told they need to reach 1500 before I
Hi , Feeling very nervous about writing this as never done anything like this before . I am 45 and was diagnosed with ET last June struggling to comes to terms with it . At the moment I am on aspirin . I visited my hematologist last week and my bloods were 1200 told they need to reach 1500 before I
Maxid
in
MPN Voice
5 years ago
My Experience With Melanoma
Obviously, my name is Ryan. I am 28 years old. I currently have stage 4 melanoma. I will share my story in order to help those whose path intersects mine. If you ever have any questions, feel free to ask. The time I have been blessed with is best used helping others. When I was 21 years old I was abusing
Obviously, my name is Ryan. I am 28 years old. I currently have stage 4 melanoma. I will share my story in order to help those whose path intersects mine. If you ever have any questions, feel free to ask. The time I have been blessed with is best used helping others. When I was 21 years old I was abusing
Ryan2
in
Young Adults with Melanoma
5 years ago
Hydrea
I am 76, Polycythaemia Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have to have another bleed. I tolerate these well but find they make me tired and breathless. Should I be considering alternative medication eg Interferon
I am 76, Polycythaemia Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have to have another bleed. I tolerate these well but find they make me tired and breathless. Should I be considering alternative medication eg Interferon
lucieboo
in
MPN Voice
5 years ago
How Does Pegasy help ET?
Before I start on Pegasy Im trying to understand the process, the mechanism that Interferons use to lower platelets. There isnt much on the net, but from what I watched and read, Interferons stimulate the auto-immune system and thats why patients often get flu-like symptoms. Because white-blood cells
Before I start on Pegasy Im trying to understand the process, the mechanism that Interferons use to lower platelets. There isnt much on the net, but from what I watched and read, Interferons stimulate the auto-immune system and thats why patients often get flu-like symptoms. Because white-blood cells
BloodZero
in
MPN Voice
5 years ago
ET and treatmeant choices
Hi All, Was diagnosed with ET about 10 years ago and platelet count averages around 700 and have been on low dose aspirin ever since. Other than general fatigue I have had no issues until I recently had a proximal DVT on a long haul flight. My Hematology consultant has now recommend starting drug therapy
Hi All, Was diagnosed with ET about 10 years ago and platelet count averages around 700 and have been on low dose aspirin ever since. Other than general fatigue I have had no issues until I recently had a proximal DVT on a long haul flight. My Hematology consultant has now recommend starting drug therapy
Crofty7
in
MPN Voice
5 years ago
Miracles Do Happen
We find out one day after being at the doctor for a check up that we have cancer. We know its from the prostate but not sure what that all really means. The Doctor tells us we have what they call a high grade aggressive type of cancer. After biopsy he says that it is a Jackie Gleason 9, with 12 positive
We find out one day after being at the doctor for a check up that we have cancer. We know its from the prostate but not sure what that all really means. The Doctor tells us we have what they call a high grade aggressive type of cancer. After biopsy he says that it is a Jackie Gleason 9, with 12 positive
duckman52
in
Advanced Prostate Cancer
5 years ago
What RRms requires of you.
What RRms requires of you. It is a little different for all of us. It is an individual request, but so is life. What works for me may not work for "YOU" The images I try to paint in words may just totally bamboozle you. Or they may appear as clear as day and make perfect sense. They may be
What RRms requires of you. It is a little different for all of us. It is an individual request, but so is life. What works for me may not work for "YOU" The images I try to paint in words may just totally bamboozle you. Or they may appear as clear as day and make perfect sense. They may be
RoyceNewton
in
My MSAA Community
5 years ago
Stem cell transplant appointment for post PV MF
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
tracey13
in
MPN Voice
5 years ago
Drink is a curse!
Help!! I contracted Hepatitis C through drug use and was treated twice with interferon almost 20 years later and finally was clear of the virus. My problem is that while I gave up drugs I picked up alcohol so actually, in terms of liver health I am no better off. My husband is a daily very heavy drinker
Help!! I contracted Hepatitis C through drug use and was treated twice with interferon almost 20 years later and finally was clear of the virus. My problem is that while I gave up drugs I picked up alcohol so actually, in terms of liver health I am no better off. My husband is a daily very heavy drinker
BedeB
in
British Liver Trust
5 years ago
Treatment not working
Hello everyone, I was on Hydroxyurea for a couple of months after my platelets reached 900 and it helped at first but after a while my platelets count kept raising again to 750 and during that period I suffered from horrible vertigo and nasuea and nothing helped. My doctor decided to switch to an injection
Hello everyone, I was on Hydroxyurea for a couple of months after my platelets reached 900 and it helped at first but after a while my platelets count kept raising again to 750 and during that period I suffered from horrible vertigo and nasuea and nothing helped. My doctor decided to switch to an injection
Wadz
in
MPN Voice
6 years ago
Persistent cold symptoms with Pegasys?
One great side effect of being on Pegasys for the last 3 years is that I’ve had hardly any colds, as interferon helps combat the cold virus. More recently, since I’ve reduced my dose to just 45mcg every 4 weeks, I’ve started to get some cold symptoms again which I guess is logical due to lower levels
One great side effect of being on Pegasys for the last 3 years is that I’ve had hardly any colds, as interferon helps combat the cold virus. More recently, since I’ve reduced my dose to just 45mcg every 4 weeks, I’ve started to get some cold symptoms again which I guess is logical due to lower levels
AndyT
in
MPN Voice
6 years ago
Parotid removal and Hydroxychloroquine
Hi everyone, thanks for having me. I've had Sjogrens since interferon treatment 10 years ago and recently needed a troublesome parotid gland removed due to unidentified lumps and chronic pain and swelling. Am awaiting biopsy results, I've previously had mediastinal lymphoma. I was also recommenced
Hi everyone, thanks for having me. I've had Sjogrens since interferon treatment 10 years ago and recently needed a troublesome parotid gland removed due to unidentified lumps and chronic pain and swelling. Am awaiting biopsy results, I've previously had mediastinal lymphoma. I was also recommenced
MajorTom
in
The Australian Sjögren's Syndrome Association
6 years ago
Ropeg versus HU/BAT results after 3 years
This is very interesting summary of trial results after 3 years. (CHR is Complete Haematological Response.) “After 36 months of treatment Ropeginterferon alfa-2b sustained higher CHR response rates compared to HU/BAT (70.5% vs. 51.4%; p=0.0122). Further, the composite endpoint, CHR including disease
This is very interesting summary of trial results after 3 years. (CHR is Complete Haematological Response.) “After 36 months of treatment Ropeginterferon alfa-2b sustained higher CHR response rates compared to HU/BAT (70.5% vs. 51.4%; p=0.0122). Further, the composite endpoint, CHR including disease
Paul123456
in
MPN Voice
6 years ago
New mpn
Hi diagnosed with ET 3 years ago age 28 been stable since now 31 and platelets high at 1560 started interferon last week last check platelets dropped to 1200!! Just wondering if anyone else on this and how it makes them feel am ok apart from I just feel quite disconnected from things, and sleepless nights
Hi diagnosed with ET 3 years ago age 28 been stable since now 31 and platelets high at 1560 started interferon last week last check platelets dropped to 1200!! Just wondering if anyone else on this and how it makes them feel am ok apart from I just feel quite disconnected from things, and sleepless nights
Samlowery17
in
MPN Voice
6 years ago
Pegasys
Hi everyone I saw my haematologist yesterday for my ET. Platelet count is gradually going up. He has said in a few months I may need to start treatment other than aspirin and whereas previously he's mentioned hydroxy this has now changed to interferon. I've read up about it including side effects. Does
Hi everyone I saw my haematologist yesterday for my ET. Platelet count is gradually going up. He has said in a few months I may need to start treatment other than aspirin and whereas previously he's mentioned hydroxy this has now changed to interferon. I've read up about it including side effects. Does
hall2
in
MPN Voice
6 years ago
Advice
Hello , I was diagnosed earlier this year .... ET...I am being asked to take Hydra carbo but I have declined .... now am considering interferon ... Still waiting for a buddy ...I’m so concerned about these treatments .. Grateful got any advice ... Melanie .
Hello , I was diagnosed earlier this year .... ET...I am being asked to take Hydra carbo but I have declined .... now am considering interferon ... Still waiting for a buddy ...I’m so concerned about these treatments .. Grateful got any advice ... Melanie .
Melanie66
in
MPN Voice
6 years ago
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