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Interferon beta-1b
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Interferon - Headache
Hi Hope everyone is well. I had my first Interferon injection Monday after stopping the Hydroxy. Felt fine on Monday, bit lightheaded on Tuesday and a headache. The light headed feeling has gone but the headache hasn't. I have been taking pain killers, the headache goes for a couple of hours but
Hi Hope everyone is well. I had my first Interferon injection Monday after stopping the Hydroxy. Felt fine on Monday, bit lightheaded on Tuesday and a headache. The light headed feeling has gone but the headache hasn't. I have been taking pain killers, the headache goes for a couple of hours but
Arnoldthecat
in
MPN Voice
1 year ago
Advice pls?
Hi everyone, I was diagnosed with ET last Wednesday (still getting my head around it all). My platelet count is slightly over 1,600 and I really wanted advice on those experienced in this field, what I should be asking at my next consultant appointment. I have been put on the Interferon treatment at
Hi everyone, I was diagnosed with ET last Wednesday (still getting my head around it all). My platelet count is slightly over 1,600 and I really wanted advice on those experienced in this field, what I should be asking at my next consultant appointment. I have been put on the Interferon treatment at
Biscuitlove
in
MPN Voice
1 year ago
Pegasys issues
Hi everyone previously I had told you that I was having Sjogrens symptoms while on Pegasys. I stopped it and saw a rheumatologist. She was very dismissive. She told me to just look up my own results on the portal and because she was convinced, without seeing any results that i do not have Sjogrens.
Hi everyone previously I had told you that I was having Sjogrens symptoms while on Pegasys. I stopped it and saw a rheumatologist. She was very dismissive. She told me to just look up my own results on the portal and because she was convinced, without seeing any results that i do not have Sjogrens.
Wewo01
in
MPN Voice
1 year ago
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myelofibrosis and interferon
Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22. I had very mild side effects which only lasted
Hi everybody, my name is Lee and I was diagnosed with ET (MPL EXON10) in Nov 2019. I progressed to Myelofibrosis in March 2021. I was put onto Interferon Pegasys June 2022 to slow down platelets which reached a high of 776. White blood count had reached 22. I had very mild side effects which only lasted
Pragmaticone
in
MPN Voice
1 year ago
Treatment choice for ET
I'm currently on Hydroxycarbamide 500/day and platelets are controlled. Looking at switching to a control drug that will ease tummy bloating. Hydroxy must be the safest/least problematic drug but it has given me bloating as a side effect. The FODMAP diet I'm on doesn't help that much, though it's still
I'm currently on Hydroxycarbamide 500/day and platelets are controlled. Looking at switching to a control drug that will ease tummy bloating. Hydroxy must be the safest/least problematic drug but it has given me bloating as a side effect. The FODMAP diet I'm on doesn't help that much, though it's still
Hidden
in
MPN Voice
1 year ago
Triple Negative Question
if you truly are triple negative PV for example, how does one treat that? Interferon targets the JAK2 cells & normal cells correct? Would interferon just target the cells in general if there is no mutation. However, if an immunotherapy cure ever comes around that can fix the JAK2 mutation… would that
if you truly are triple negative PV for example, how does one treat that? Interferon targets the JAK2 cells & normal cells correct? Would interferon just target the cells in general if there is no mutation. However, if an immunotherapy cure ever comes around that can fix the JAK2 mutation… would that
Nrl303
in
MPN Voice
1 year ago
Treatment options
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
Interferon Mood effects
Afternoon all,Been a while since I wrote on here. I met my consultant this morning,my platelets and counts are all good. But she mentioned about changing from HU to Interferon. Which is better for my age, but did explain side effects can include mood swings. Possible suicidal thoughts. Has anyone suffered
Afternoon all,Been a while since I wrote on here. I met my consultant this morning,my platelets and counts are all good. But she mentioned about changing from HU to Interferon. Which is better for my age, but did explain side effects can include mood swings. Possible suicidal thoughts. Has anyone suffered
Smudger0122
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
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
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
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