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Interferon beta-1a
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Potential adverse effects of long-term venesection used to treat PV.
I got curious after watching the Richard Silver presentation that was recently posted on the forum. Dr. Silver quoted some potential adverse effects from long-term use of venesection (AKA phlebotomy) to manage PV. I had seen those findings previously in the literature. I have also experienced some
I got curious after watching the Richard Silver presentation that was recently posted on the forum. Dr. Silver quoted some potential adverse effects from long-term use of venesection (AKA phlebotomy) to manage PV. I had seen those findings previously in the literature. I have also experienced some
hunter5582
in
MPN Voice
1 year ago
Sun screen
Hi Folks, today I had one of my many cycling rides which always includes a stop at a tea room where I know there will be other cyclists so it is also a good social event. Before setting off I diligently apply my factor 50 sunscreen to my face and today also my legs as I dared to wear shorts. I had to
Hi Folks, today I had one of my many cycling rides which always includes a stop at a tea room where I know there will be other cyclists so it is also a good social event. Before setting off I diligently apply my factor 50 sunscreen to my face and today also my legs as I dared to wear shorts. I had to
Janis12
in
MPN Voice
1 year ago
Tysabri for me
I don’t know about advice, but I can tell you my experience using Tysabri. I have been receiving an infusion—Tysabri—for at 13+ years. After my diagnosis only the ABC drugs—avonex, betaseron and copaxone—were available and I had intolerable symptoms. My doctor recommended Tysabri which was new at the
I don’t know about advice, but I can tell you my experience using Tysabri. I have been receiving an infusion—Tysabri—for at 13+ years. After my diagnosis only the ABC drugs—avonex, betaseron and copaxone—were available and I had intolerable symptoms. My doctor recommended Tysabri which was new at the
disconcerting
in
My MSAA Community
1 year ago
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possible Sjögren Syndrome
Hi All I am in a quandary, so need some input. I have been on Pegasys for 11 months. I am taking 67 mcg weekly. Six months ago I started having symptoms of parotid gland swelling. I have had 2 episodes. Then at the end of March I had an episode of peri orbital swelling with fever. I have been overwhelmed
Hi All I am in a quandary, so need some input. I have been on Pegasys for 11 months. I am taking 67 mcg weekly. Six months ago I started having symptoms of parotid gland swelling. I have had 2 episodes. Then at the end of March I had an episode of peri orbital swelling with fever. I have been overwhelmed
Wewo01
in
MPN Voice
1 year ago
1st patient enrolled in global Phase 2 trial of daxdilimab for lupus
Study to test safety, efficacy of Horizon's lupus nephritis treatment by Steve Bryson PhD | May 18, 2023 A woman speaks with a megaphone in this announcement illustration. A Phase 2 trial evaluating the safety and efficacy of daxdilimab, a potentially first-in-class treatment for people with active
Study to test safety, efficacy of Horizon's lupus nephritis treatment by Steve Bryson PhD | May 18, 2023 A woman speaks with a megaphone in this announcement illustration. A Phase 2 trial evaluating the safety and efficacy of daxdilimab, a potentially first-in-class treatment for people with active
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
Weekly chills after IFN injection
Hi all, I hope everyone is doing as well as can be. Just a quick question for you all, I have had to recently wean off some other medication in the last couple of weeks (non related) to to my ET, Calr I have noticed I am suffering the chills the day following my interferon injection. Whilst I have
Hi all, I hope everyone is doing as well as can be. Just a quick question for you all, I have had to recently wean off some other medication in the last couple of weeks (non related) to to my ET, Calr I have noticed I am suffering the chills the day following my interferon injection. Whilst I have
Grendall
in
MPN Voice
1 year ago
Medication choices after hydroxyurea
I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years. Unfortunately, this past week was a bit challenging with every possible bad digestive tract issue presenting itself. I'm on the mend but have to accept
I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years. Unfortunately, this past week was a bit challenging with every possible bad digestive tract issue presenting itself. I'm on the mend but have to accept
saltmarsh
in
MPN Voice
1 year ago
A very special interview with Nona Baker Co Chair of MPN Voice & Professor Claire Harrison
In this interview Professor Claire Harrison shares breaking news with up to date results from the MAJIC PV Study. Following a recent media article it also clarifies and reassures the importance of existing, very successful therapies such as Hydroxycarbamide and Interferons, which are used and reviewed
In this interview Professor Claire Harrison shares breaking news with up to date results from the MAJIC PV Study. Following a recent media article it also clarifies and reassures the importance of existing, very successful therapies such as Hydroxycarbamide and Interferons, which are used and reviewed
Debinha
Administrator
in
MPN Voice
1 year ago
Frequent traveler dealing with ET and concerns
Hello everybody, I was diagnosed with ET (presumably at least) 6 years ago. I started with Anagrelide and found it did not work for me since I developed heart racing. Therefore, I was put onto Interferon. Though it worked, I found dealing with health insurance and taking the vaccines onto planes quite
Hello everybody, I was diagnosed with ET (presumably at least) 6 years ago. I started with Anagrelide and found it did not work for me since I developed heart racing. Therefore, I was put onto Interferon. Though it worked, I found dealing with health insurance and taking the vaccines onto planes quite
marinescientist
in
MPN Voice
1 year ago
Debating about starting Interferon
I have had PV for about 4 months now & have been pretty much asymptotic aside from numbness in my left foot and left hand (which is pretty scary & uncomfortable) . I have been having some pretty bad anxiety since being diagnosed because I’m so young (26) & am hoping that won’t interfere with me starting
I have had PV for about 4 months now & have been pretty much asymptotic aside from numbness in my left foot and left hand (which is pretty scary & uncomfortable) . I have been having some pretty bad anxiety since being diagnosed because I’m so young (26) & am hoping that won’t interfere with me starting
Nrl303
in
MPN Voice
1 year ago
Absence of joint pains
I used to suffer from joint pains, back, leg, occasionally hip. Diagnosed ET (Calr+) about 15 months ago and prescribed Peg. Interferon. Well, for the past few months, I’ve not experienced any joint pains whatsoever. Is this just coincidental or would that be the effect of interferon? Views welcome
I used to suffer from joint pains, back, leg, occasionally hip. Diagnosed ET (Calr+) about 15 months ago and prescribed Peg. Interferon. Well, for the past few months, I’ve not experienced any joint pains whatsoever. Is this just coincidental or would that be the effect of interferon? Views welcome
gilded
in
MPN Voice
1 year ago
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
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
Why do we use IFN-α vs IFN-β? Might IFN-β be preferred?
Very familiar note on pegylation from 2013: “PLEGRIDY is a new molecular entity in which
interferon
beta
-
1a
is pegylated to extend its half-life and prolong its exposure in the body, enabling study of a less frequent dosing schedule” https://www.fiercebiotech.com/biotech/biogen-idec-submits-application-to-fda-for-approval-of-plegridy
Very familiar note on pegylation from 2013: “PLEGRIDY is a new molecular entity in which
interferon
beta
-
1a
is pegylated to extend its half-life and prolong its exposure in the body, enabling study of a less frequent dosing schedule” https://www.fiercebiotech.com/biotech/biogen-idec-submits-application-to-fda-for-approval-of-plegridy
EPguy
in
MPN Voice
2 years 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
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