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Interferon alfa-2a
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Hi everyone, I'm just over a year into my treatment for PV. Hydroxycarbamide 500mg weekdays 1000mg weekends with daily 75mg aspirin. I have have monthly blood tests with the aim of keeping haematocrit to below 0.45. Generally up 0.47 is ok anything above I have a venesection. hen I was first diagnosed
Hi everyone, I'm just over a year into my treatment for PV. Hydroxycarbamide 500mg weekdays 1000mg weekends with daily 75mg aspirin. I have have monthly blood tests with the aim of keeping haematocrit to below 0.45. Generally up 0.47 is ok anything above I have a venesection. hen I was first diagnosed
Swim360
in
MPN Voice
1 year ago
eyesight problems
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
hi all, I hope you are all keeping well. Just wanted to ask people who are on Interferon, have they noticed a vast change in their eyesight or is it just from the Essential Thrombocythemia itself… I know when you usually ask the Haemo docs they don’t know or are not aware of it TIA
Grendall
in
MPN Voice
1 year ago
Update on vitamin 12 and my treatment plan for PV diagnosed in December 2022
Hi everyone I hope you are all ok I wanted to update you about the vitamin 12 to prevent mosquitos bites . Really sorry but it's vitamin b1 not 12 🙃 I got it wrong but my consultant has ok me to take it short term . I saw her yesterday and she is on the MPN list of specialists. I've been on 45
Hi everyone I hope you are all ok I wanted to update you about the vitamin 12 to prevent mosquitos bites . Really sorry but it's vitamin b1 not 12 🙃 I got it wrong but my consultant has ok me to take it short term . I saw her yesterday and she is on the MPN list of specialists. I've been on 45
Blonde25
in
MPN Voice
1 year ago
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Ruxolitinib and Hydroxycarbamide
Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my hydroxycarbamide up. When I was seen they started me on Ruxolitinib I did well at first but could
Hi everyone as I posted befor I was on hydroxycarbamide for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my hydroxycarbamide up. When I was seen they started me on Ruxolitinib I did well at first but could
Mudmaker
in
MPN Voice
1 year ago
Hormones?
Anyone out there on birth control or any type of hormone? I think between a phlebotomy I had about a month ago and Besremi have thrown my hormones off. I have been on my cycle almost a month. I am perimenopausal being 41, but been reading a lot about interferons and the affect on menstrual cycles.
Anyone out there on birth control or any type of hormone? I think between a phlebotomy I had about a month ago and Besremi have thrown my hormones off. I have been on my cycle almost a month. I am perimenopausal being 41, but been reading a lot about interferons and the affect on menstrual cycles.
KLCTJC
in
MPN Voice
1 year ago
Real world experience with Besremi in ET and PV following exposure to Pegasys.
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Manouche
in
MPN Voice
1 year ago
3 Oct 2023 Sleep issue solved so far I think
G'day ms friends and family. Everybody great so far today? I am, I slept all night, did not wake to urinate, slept alll night and woke up at the usual time. I had a win, the medicine is called zolpidem .5mg. I am sure there are side effects but I just want to sleep so Iwill find out about it
G'day ms friends and family. Everybody great so far today? I am, I slept all night, did not wake to urinate, slept alll night and woke up at the usual time. I had a win, the medicine is called zolpidem .5mg. I am sure there are side effects but I just want to sleep so Iwill find out about it
RoyceNewton
in
My MSAA Community
9 months ago
weight loss on Peg
Curious to see if anyone else has lost weight while on Peg interferon? I’ve suddenly started to lose weight in the last month. Probably 6 lbs without trying. I’ve been on Peg for 10 months with no side effects at all. I really have no other reason to have lost weight and I do see it listed as a side
Curious to see if anyone else has lost weight while on Peg interferon? I’ve suddenly started to lose weight in the last month. Probably 6 lbs without trying. I’ve been on Peg for 10 months with no side effects at all. I really have no other reason to have lost weight and I do see it listed as a side
Airslie
in
MPN Voice
1 year ago
Response to sunscreen question.
I am very grateful to you all for your responses in relation to my question about sunscreens , medication and hair loss, we are lucky on this site to have such a bank of information from people who have years of experience and comforting to know that there are others in the same boat. At my hospital
I am very grateful to you all for your responses in relation to my question about sunscreens , medication and hair loss, we are lucky on this site to have such a bank of information from people who have years of experience and comforting to know that there are others in the same boat. At my hospital
Janis12
in
MPN Voice
1 year ago
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
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
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