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Interferon alfa-2a
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High Risk?
I’ve seen the consultant today, all the NSG results are now back. He said they showed I was definitely transforming to MF, also that some markers showed I was in the high risk group for transforming to Leukaemia. I found that very scary. He said it would probably be a few years but that I would be monitored
I’ve seen the consultant today, all the NSG results are now back. He said they showed I was definitely transforming to MF, also that some markers showed I was in the high risk group for transforming to Leukaemia. I found that very scary. He said it would probably be a few years but that I would be monitored
lizzziep
in
MPN Voice
11 months ago
Quarterly follow up - switching to interferon
hello all went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down but have stalled out around the 8-900K mark. I was given the choice of upping the HU to 3x500mg a day or starting interferon. My hematologist
hello all went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down but have stalled out around the 8-900K mark. I was given the choice of upping the HU to 3x500mg a day or starting interferon. My hematologist
dbus1417
in
MPN Voice
1 year ago
Is peg interferon always slow to reduce platelet count?
Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020. From Jan 2023 to date my platelet count has only
Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020. From Jan 2023 to date my platelet count has only
Maxamber
in
MPN Voice
1 year ago
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Surgery with an MPN ...XXX
I just wanted to write this post to help reassure any of you that may need surgery. I've had other health problems for quite some time now, and really needed a hysterectomy...the gynae surgeons were wary, due to my extra weight and my PV diagnosis. I was told in May that they thought I was too complex
I just wanted to write this post to help reassure any of you that may need surgery. I've had other health problems for quite some time now, and really needed a hysterectomy...the gynae surgeons were wary, due to my extra weight and my PV diagnosis. I was told in May that they thought I was too complex
RCBr
in
MPN Voice
1 year ago
Ruxalitinib and Peg interferon
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
waddles22
in
MPN Voice
1 year ago
Besremi after a year
This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis
This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis
GardNerd
in
MPN Voice
1 year ago
Treatment-free remission as a new goal for patients with PV
« Treatment-free remission Patients are considered to be in treatment-free remission when therapy is discontinued and the following occur: Complete hematologic response Deep molecular response Reversion of bone marrow picture Absence of vascular events and disease evolution No treatment restart
« Treatment-free remission Patients are considered to be in treatment-free remission when therapy is discontinued and the following occur: Complete hematologic response Deep molecular response Reversion of bone marrow picture Absence of vascular events and disease evolution No treatment restart
Manouche
in
MPN Voice
1 year ago
Besremi and thyroid
just seeing if anyone developed hypothyroidism after starting interferon. I know this can happen and can be a common occurrence with alpha or even beta interferon. I have no symptoms but they found it on my labs. My pcp just started thyroid replacement as this is pretty easy to manage once you get
just seeing if anyone developed hypothyroidism after starting interferon. I know this can happen and can be a common occurrence with alpha or even beta interferon. I have no symptoms but they found it on my labs. My pcp just started thyroid replacement as this is pretty easy to manage once you get
KLCTJC
in
MPN Voice
1 year ago
Due to start interferon
Hello, I haven’t posted in over 2 years but have been following the posts and great advice and support given. I was diagnosed with PV in Dec 2020 aged 41. I was on HU for afew months but decided to come off it and just do aspirin and venesection. That worked for last 2 years but platelets over 1000
Hello, I haven’t posted in over 2 years but have been following the posts and great advice and support given. I was diagnosed with PV in Dec 2020 aged 41. I was on HU for afew months but decided to come off it and just do aspirin and venesection. That worked for last 2 years but platelets over 1000
Deevie1
in
MPN Voice
1 year ago
Cervical screening positive for HPV
Hi, I am ET triple negative 7+ years, have recently changed from Hydroxy to Interferon 90mcg every two weeks, I have just had my results back from a cervical screen test and have tested positive for HPV but there are no abnormal cells so currently low risk for cervical cancer. As someone who is immune
Hi, I am ET triple negative 7+ years, have recently changed from Hydroxy to Interferon 90mcg every two weeks, I have just had my results back from a cervical screen test and have tested positive for HPV but there are no abnormal cells so currently low risk for cervical cancer. As someone who is immune
beckyluck
in
MPN Voice
1 year ago
Update, sort of good and not so good news
My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years. The good news is my allele burden
My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years. The good news is my allele burden
shiftzz
in
MPN Voice
1 year ago
itchy skin
hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I have developed terrible itchy skin , after showering , clothes touching me even my fingers itch , the Interferon has worked well apart from this
hello , hope everyone is keeping well . I have been on Interferon 45 mcg for a month then increased to 90 mcg which I have been taking for three weeks but I have developed terrible itchy skin , after showering , clothes touching me even my fingers itch , the Interferon has worked well apart from this
Franko21
in
MPN Voice
1 year ago
Anagrelide
Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and on hydroxycarbomide, my platelets have been creeping up so my hydroxy has been increased which has helped but I am not happy with the side effects
Hello all you good people, just a question about Anagrelide. How many people on this forum are taking it currently or have tried it in the past ? I have ET and on hydroxycarbomide, my platelets have been creeping up so my hydroxy has been increased which has helped but I am not happy with the side effects
Janis12
in
MPN Voice
1 year ago
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
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
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
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