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Interferon alfa-2a
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ET and RA
Hello everyone, haven’t been on here for a while. I’ve been trying to sort things out after being told I now have RA too. It’s been a long process for consultants to find any medication I can take as I can’t take the standard prescribed RA medication as it interferes with others I’m on. I also have
Hello everyone, haven’t been on here for a while. I’ve been trying to sort things out after being told I now have RA too. It’s been a long process for consultants to find any medication I can take as I can’t take the standard prescribed RA medication as it interferes with others I’m on. I also have
Jynx93
in
MPN Voice
1 year ago
Travelling with Interferon
Hi folks I’m travelling abroad for first time for 5 years and from memory, I previously had to carry a letter from my consultant as justification for carrying my peg on the plane (presumably as it’s a needle). Does anyone who has travelled recently know if this is still the case? Thanks in advance
Hi folks I’m travelling abroad for first time for 5 years and from memory, I previously had to carry a letter from my consultant as justification for carrying my peg on the plane (presumably as it’s a needle). Does anyone who has travelled recently know if this is still the case? Thanks in advance
PT99
in
MPN Voice
1 year ago
Besremi trial
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
wateron
in
MPN Voice
1 year ago
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MPN Voice Vlogcasts – In Conversation With… Alisia O’Sullivan, ET patient & MPN Voice volunteer
MPN Voice Vlogcasts – In Conversation With… a series of monthly informal conversations with members of the MPN community with Nona co-chair of MPN Voice and a MPN patient herself. The vlogcasts can be viewed on the MPN Voice YouTube channel. The 16th vlogcast in the series is - In Conversation With
MPN Voice Vlogcasts – In Conversation With… a series of monthly informal conversations with members of the MPN community with Nona co-chair of MPN Voice and a MPN patient herself. The vlogcasts can be viewed on the MPN Voice YouTube channel. The 16th vlogcast in the series is - In Conversation With
Mazcd
MPNVoice
in
MPN Voice
1 year ago
Can you come off Thyroxine permanently?
Hi everyone I have asked this question before but here i am again!I have been on Thyroxine for around 8yrs due to Interferon causing my thyroid to become very overactive at first then becoming underactive! The question i would like to ask is i have read that if your thyroid numbers are normal
Hi everyone I have asked this question before but here i am again!I have been on Thyroxine for around 8yrs due to Interferon causing my thyroid to become very overactive at first then becoming underactive! The question i would like to ask is i have read that if your thyroid numbers are normal
ballie52
in
Thyroid UK
1 year ago
pseudohyperkalemia
update from recent doctor discussion. She agreed we proved Pseudohyperkalemia. This week’s blood testing adventure again triggered unnecessary attention but perhaps needed attention as the issue of invalid blood samples had to get attention. The first step was again getting a second blood test at
update from recent doctor discussion. She agreed we proved Pseudohyperkalemia. This week’s blood testing adventure again triggered unnecessary attention but perhaps needed attention as the issue of invalid blood samples had to get attention. The first step was again getting a second blood test at
Mishie14
in
MPN Voice
1 year ago
Ruxolitinib Versus Best Available Therapy for Polycythemia Vera Intolerant or Resistant to Hydroxycarbamide in a Randomized Trial
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
« Patients with PV often have high JAK2 V 617F VAF (>50%) because of the emergence of a dominant clone with concurrent loss of wild-type JAK2, which in turn is associated with increased risk of vascular events and transformation to myelofibrosis. In MPN, unlike other hematologic malignancies, for example
Manouche
in
MPN Voice
1 year ago
Interferon
Hi my name is Denise I have been asked by Haematology consultant to consider starting on Interferon but I am worried about side effects. Particularly hair loss.
Hi my name is Denise I have been asked by Haematology consultant to consider starting on Interferon but I am worried about side effects. Particularly hair loss.
Mudmaker
in
MPN Voice
1 year ago
Coping with itchiness and side effects of peg-interferon
Hi everyone, I'm new to this forum and relatively new to pegylated interferon. I haven't really had the side effects I was expecting but after a month or so on it my skin is now so itchy that it's extremely painful to shower or to have any water touch my skin, basically. Does anyone have any experience
Hi everyone, I'm new to this forum and relatively new to pegylated interferon. I haven't really had the side effects I was expecting but after a month or so on it my skin is now so itchy that it's extremely painful to shower or to have any water touch my skin, basically. Does anyone have any experience
emcee19
in
MPN Voice
1 year ago
Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
PhysAssist
in
MPN Voice
1 year ago
struggling with ET symptoms after covid
Hi all. I was diagnosed with JAK2 positive ET 2 years ago and up until early this week I was injecting 180mg of interferon weekly. My platelets have hovered around the 800 mark for some time so during an appointment with an MPN specialist they suggested changing my medication to Anegralide. Before mid
Hi all. I was diagnosed with JAK2 positive ET 2 years ago and up until early this week I was injecting 180mg of interferon weekly. My platelets have hovered around the 800 mark for some time so during an appointment with an MPN specialist they suggested changing my medication to Anegralide. Before mid
FashionLover
in
MPN Voice
1 year ago
Besremi - Dosing Change
I consulted my hematologist after having 3 months of low WBC, RBC, and HCT. I followed his suggestion to inject 100 mcg of Besremi every month instead of of bi-weekly, This dose is consistent with the manufacturer's recommendation and I quote from Pharma Essentia website: "BESREMi is not chemotherapy
I consulted my hematologist after having 3 months of low WBC, RBC, and HCT. I followed his suggestion to inject 100 mcg of Besremi every month instead of of bi-weekly, This dose is consistent with the manufacturer's recommendation and I quote from Pharma Essentia website: "BESREMi is not chemotherapy
Pat032018
in
MPN Voice
1 year ago
Interferon side effects
Right here we go, topic for conversation. After 10 years on hydroxy, I have changed to Interferon Doctors now working on me separately Raised liver enzymes raised thyroid and now today, high rh factor result aahhhh Havent seen my haem Consultant for couple years, he passes messages to continue
Right here we go, topic for conversation. After 10 years on hydroxy, I have changed to Interferon Doctors now working on me separately Raised liver enzymes raised thyroid and now today, high rh factor result aahhhh Havent seen my haem Consultant for couple years, he passes messages to continue
Hidden
in
MPN Voice
1 year ago
Vit D and interferon
I wanted to put this out there since so many of us are on interferon. As a lot of you know I am the super lucky one with MS is well! Gotta love when you are like one in however many million! For once I want to be ordinary! Anyways, I saw my neurologist and he recommended vit D as he said it helps
I wanted to put this out there since so many of us are on interferon. As a lot of you know I am the super lucky one with MS is well! Gotta love when you are like one in however many million! For once I want to be ordinary! Anyways, I saw my neurologist and he recommended vit D as he said it helps
KLCTJC
in
MPN Voice
1 year ago
interferon alpha effectiveness for ET
hi again 😃 I recently asked how long it takes for interferon alpha perg to start working and decrease my platelet count. My diagnosis is ER (triple negative). I have been injecting weekly for 12 weeks now, 8 weeks at 90mg and the last 4 weeks at 135mg. My platelet count remains stubbornly at 1300😳.
hi again 😃 I recently asked how long it takes for interferon alpha perg to start working and decrease my platelet count. My diagnosis is ER (triple negative). I have been injecting weekly for 12 weeks now, 8 weeks at 90mg and the last 4 weeks at 135mg. My platelet count remains stubbornly at 1300😳.
Maxamber
in
MPN Voice
1 year ago
Variations in Patient Response to interferons
Had an interesting discussion with my MPN doc today. I have PV and have been on Besremi for 14 months and recently increased to the maximum dose of 500 mcg because we are not seeing the hct control we would like to see. All other labs have improved on Besremi but still requiring phlebotomy about every
Had an interesting discussion with my MPN doc today. I have PV and have been on Besremi for 14 months and recently increased to the maximum dose of 500 mcg because we are not seeing the hct control we would like to see. All other labs have improved on Besremi but still requiring phlebotomy about every
mfh7
in
MPN Voice
1 year ago
Changing blood results x
Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are finally reducing without venesection which it good....but my most recent plasma viscosity was 185...and my RDW was 18% which it has been for a while. Should I be concerned about this? ....I must admit it's beginning to worry
Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are finally reducing without venesection which it good....but my most recent plasma viscosity was 185...and my RDW was 18% which it has been for a while. Should I be concerned about this? ....I must admit it's beginning to worry
RCBr
in
MPN Voice
1 year ago
Stay on Bomedemstat or....not?
I have E.T. and originally was on H.U., but began blooming in skin cancers which has continued and experiencing greater fatigue when I began bomedmestat, a phase two study which is now beginning stage three. My fatigue improved overall, but recently results thus far of the use of bomedemstat with E.T
I have E.T. and originally was on H.U., but began blooming in skin cancers which has continued and experiencing greater fatigue when I began bomedmestat, a phase two study which is now beginning stage three. My fatigue improved overall, but recently results thus far of the use of bomedemstat with E.T
givingITMybest
in
MPN Voice
1 year ago
peg interferon and sun
hi everyone Looking for advice from you all. I’ve lived with diagnosis of PV now for 7 years managing on venesections and aspirin. Since October I’ve been prescribed peg interferon injections, currently on 90mcg weekly My question is does anyone have advice re sunshine ? My heam nurses says no sun
hi everyone Looking for advice from you all. I’ve lived with diagnosis of PV now for 7 years managing on venesections and aspirin. Since October I’ve been prescribed peg interferon injections, currently on 90mcg weekly My question is does anyone have advice re sunshine ? My heam nurses says no sun
Sanga
in
MPN Voice
1 year ago
Erythromelalgia?
I was diagnosed with cellulitis 5 or 6 weeks ago, I’ve had 2 lots of antibiotics, 2 scans to make sure no blood clots, this redness has spread around my leg and is now starting in the other one. My left leg and foot are quite swollen. I’ve seen various nurses and GP’s - never the same one twice - the
I was diagnosed with cellulitis 5 or 6 weeks ago, I’ve had 2 lots of antibiotics, 2 scans to make sure no blood clots, this redness has spread around my leg and is now starting in the other one. My left leg and foot are quite swollen. I’ve seen various nurses and GP’s - never the same one twice - the
lizzziep
in
MPN Voice
1 year ago
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