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Interferon alfa-2b
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Things that I do because , just because
Things that I do, just because I can. I passionately dislike needles and do everything that I can to avoid them. Though I did religiously take Interferon Beta 1b for a decade without stopping. Get a baseline reading of your blood levels. Any vitamins that “YOU” can think of, cholesterol, things
Things that I do, just because I can. I passionately dislike needles and do everything that I can to avoid them. Though I did religiously take Interferon Beta 1b for a decade without stopping. Get a baseline reading of your blood levels. Any vitamins that “YOU” can think of, cholesterol, things
RoyceNewton
in
My MSAA Community
5 years ago
Platelets 1200 - No Action to be taken?
ET Patient diagnosed 23 years ago, now age 46. Tried Hydroxy, Interferon, and other drugs, without long term success, due to side effects. Now in a situation where Platelet count is 1200 and potentially rising. Now only taking Aspirin. Feeling vulnerable as I am now being told no other options and should
ET Patient diagnosed 23 years ago, now age 46. Tried Hydroxy, Interferon, and other drugs, without long term success, due to side effects. Now in a situation where Platelet count is 1200 and potentially rising. Now only taking Aspirin. Feeling vulnerable as I am now being told no other options and should
Arb411
in
MPN Voice
5 years ago
Worried and need advice
Diagnosis: ET Age:41 Date: June 2018 Current platelet count: 1700, 000 Drug: Interferon ( Pegasys) started March 2019 My platelet count is currently climbing.5/1 each week, which is why I have started Interferon, and nobody knows why. I suspect stress levels at work and in life, but my Heamatologist
Diagnosis: ET Age:41 Date: June 2018 Current platelet count: 1700, 000 Drug: Interferon ( Pegasys) started March 2019 My platelet count is currently climbing.5/1 each week, which is why I have started Interferon, and nobody knows why. I suspect stress levels at work and in life, but my Heamatologist
Charlieapple2018
in
MPN Voice
5 years ago
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Critical illness claim success!
This is a really big Thank you to those of you who inspired me to proceed with a claim. I was told on Friday that my claim was successful! As a first time Mum to a 6 month old this money will allow me to option to return to work on my terms. Being diagnosed with ET has been mind blowing especially after
This is a really big Thank you to those of you who inspired me to proceed with a claim. I was told on Friday that my claim was successful! As a first time Mum to a 6 month old this money will allow me to option to return to work on my terms. Being diagnosed with ET has been mind blowing especially after
JojoWonder
in
MPN Voice
5 years ago
Worth reading if considering Pegasys
Dr Silver is the Interferon guru, based of his long experience using Interferon as a first line treatment choice. Also he recommends INF/Pegasys at an early stage when patients still low risk. Most Hems tend to use HU as front line drug and won’t medicate for low risk patients https://www.onclive.com
Dr Silver is the Interferon guru, based of his long experience using Interferon as a first line treatment choice. Also he recommends INF/Pegasys at an early stage when patients still low risk. Most Hems tend to use HU as front line drug and won’t medicate for low risk patients https://www.onclive.com
Paul123456
in
MPN Voice
5 years ago
Pegasys struggles..any tips?
Hi All 48 and diagnosed with ET (mpl mutation) after a routine blood test 10+ years ago. Platelets average around the 720 mark and on daily aspirin until I had blood clots in my leg last year. Medication changed to interferon, initially 3miu twice a week, but now moved to pegasys weekly 135mig injections
Hi All 48 and diagnosed with ET (mpl mutation) after a routine blood test 10+ years ago. Platelets average around the 720 mark and on daily aspirin until I had blood clots in my leg last year. Medication changed to interferon, initially 3miu twice a week, but now moved to pegasys weekly 135mig injections
Crofty7
in
MPN Voice
5 years ago
Interferon and neuralgia?
For the past week I've had pain from neuralgia (pain and numbness across one side of my face) - I went to the GP and was told that it would probably 'settle down' in a couple of weeks. I hadn't been to the GP since my diagnosis so spent a bit of time catching him up on my treatment. The literature he
For the past week I've had pain from neuralgia (pain and numbness across one side of my face) - I went to the GP and was told that it would probably 'settle down' in a couple of weeks. I hadn't been to the GP since my diagnosis so spent a bit of time catching him up on my treatment. The literature he
Not2bad
in
MPN Voice
5 years ago
Goals goals goals
This is something that “YOU” without any shadow of a doubt want to consider. Our initial goal is achieved. Which Disease Modifying Therapy (DMT) That is the huge one and it is out of the way for now. Of course if after a month or more, “YOU” are still having terrible reactions then onto your second DMT
This is something that “YOU” without any shadow of a doubt want to consider. Our initial goal is achieved. Which Disease Modifying Therapy (DMT) That is the huge one and it is out of the way for now. Of course if after a month or more, “YOU” are still having terrible reactions then onto your second DMT
RoyceNewton
in
My MSAA Community
5 years ago
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
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
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