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Interferon alfa-2a
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Still waiting …
Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal mail) about 3 weeks ago, however Professor Harrison says they haven’t received anything yet. I rang my specialist nurse and asked if it had been sent
Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal mail) about 3 weeks ago, however Professor Harrison says they haven’t received anything yet. I rang my specialist nurse and asked if it had been sent
lizzziep
in
MPN Voice
9 months ago
Trouble getting interferon?
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
Owl-fan
in
MPN Voice
9 months ago
A bit disappointed
I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been on peg interferon for 8 weeks. However, I requested quite a few weeks ago for referral to Professor Harrison at Guys, my doctor was reluctant
I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been on peg interferon for 8 weeks. However, I requested quite a few weeks ago for referral to Professor Harrison at Guys, my doctor was reluctant
lizzziep
in
MPN Voice
9 months ago
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Decisions, decisions
I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to AML, but it would probably be a few years. I asked to be referred to Professor Harrison, I have asked for this at each appointment. I managed
I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to AML, but it would probably be a few years. I asked to be referred to Professor Harrison, I have asked for this at each appointment. I managed
lizzziep
in
MPN Voice
10 months ago
platelet action level
hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45
hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45
STK52
in
MPN Voice
10 months ago
COVID and Pegylated Interferon
At my last Haematology appointment the Dr told me that Interferon helps strengthen the immune system. I have also read that Interferon has been given to some patients with COVID to help with their recovery. I therefore wonder if the latest upcoming booster vaccination is required. Does anyone have
At my last Haematology appointment the Dr told me that Interferon helps strengthen the immune system. I have also read that Interferon has been given to some patients with COVID to help with their recovery. I therefore wonder if the latest upcoming booster vaccination is required. Does anyone have
AnitaJ
in
MPN Voice
10 months ago
Pegasys and increasingly low haemoglobin count
Hi I’ve been on interferon for 5 years in total and pegasys for the last 2 or 3 years for my PV. I’ve been injecting 90mg weekly until July as both my platelets and haemoglobin have gradually been dropping. My frequency has therefore been changed to once every 2 weeks for the past month. Platelets
Hi I’ve been on interferon for 5 years in total and pegasys for the last 2 or 3 years for my PV. I’ve been injecting 90mg weekly until July as both my platelets and haemoglobin have gradually been dropping. My frequency has therefore been changed to once every 2 weeks for the past month. Platelets
PT99
in
MPN Voice
10 months ago
Açai powder
Açai Has anyone taken Açai powder for a supplement I have PV and take 90 micrograms of peg interferon a week and a blood thinner . It's know has the Açai berry but is technically a drupe not a berry . It suppose to be really good for blood cancers ? I just wanted to know before I start using
Açai Has anyone taken Açai powder for a supplement I have PV and take 90 micrograms of peg interferon a week and a blood thinner . It's know has the Açai berry but is technically a drupe not a berry . It suppose to be really good for blood cancers ? I just wanted to know before I start using
Blonde25
in
MPN Voice
10 months ago
MF, considering interferon treatment
Hello everyone I haven't posted for a while. All has been well, but my spleen is getting bigger now at 19.4cm. I am MF patient and 54. Working full time. I have been ok with it, but I am more aware of it and sometimes uncomfortable, or have to lie right (I feel it under my ribs, in my back), and I
Hello everyone I haven't posted for a while. All has been well, but my spleen is getting bigger now at 19.4cm. I am MF patient and 54. Working full time. I have been ok with it, but I am more aware of it and sometimes uncomfortable, or have to lie right (I feel it under my ribs, in my back), and I
Mrs_Average
in
MPN Voice
10 months ago
Doctors opinion ….
I’ve seen the consultant this afternoon. I repeated I want a second opinion from Professor Harrison, he agreed, but said he’d never referred anyone to her and didn’t know what to do! Told him I had just emailed and asked about it, hopefully he will do the same. Anyway, after a month on peg interferon
I’ve seen the consultant this afternoon. I repeated I want a second opinion from Professor Harrison, he agreed, but said he’d never referred anyone to her and didn’t know what to do! Told him I had just emailed and asked about it, hopefully he will do the same. Anyway, after a month on peg interferon
lizzziep
in
MPN Voice
10 months ago
stinging under the skin with PV
for some reason I am suffering with horrible stinging.. not itching with PV. Lately it’s been practically all day long and it’s unbearable. I do take anti histamines but lately they aren’t helping. I also take hot bats which give temporary relief. Wondering if the Peg Interferon is making it worse suddenly
for some reason I am suffering with horrible stinging.. not itching with PV. Lately it’s been practically all day long and it’s unbearable. I do take anti histamines but lately they aren’t helping. I also take hot bats which give temporary relief. Wondering if the Peg Interferon is making it worse suddenly
Airslie
in
MPN Voice
10 months ago
Event-free survival in patients with polycythemia vera treated with Besremi versus best available treatment
»Normal life expectancy may be achievable in PV based on comparable overall survival in interferon-treated patients and a matched US population (p = 0.3), contrasting with shortened survival (p = 0.03) in non-interferon treated patients at the same academic center [3]. Although overall survival was
»Normal life expectancy may be achievable in PV based on comparable overall survival in interferon-treated patients and a matched US population (p = 0.3), contrasting with shortened survival (p = 0.03) in non-interferon treated patients at the same academic center [3]. Although overall survival was
Manouche
in
MPN Voice
10 months ago
Interferons as the First Choice of Cytoreduction in ET and PV
There has been a recent resurgence of interest in interferons for MPNs given the development of pegylated formulations, including pegylated
interferon
alfa
-
2a
(Pegasys), pegylated
interferon
alfa
-2b (PegIntron), and ropeginterferon
alfa
-2b (Besremi).
There has been a recent resurgence of interest in interferons for MPNs given the development of pegylated formulations, including pegylated
interferon
alfa
-
2a
(Pegasys), pegylated
interferon
alfa
-2b (PegIntron), and ropeginterferon
alfa
-2b (Besremi).
Manouche
in
MPN Voice
2 years ago
What to do ….
Warning - long post! I’m not sure what I’m really asking here, or if I’m just looking for a sounding board. At my appointment last month my haematologist told me my ET had now changed to MF, after a bmb and NSG testing. He also said I had markers for high risk for leukaemia. I didn’t ask what the markers
Warning - long post! I’m not sure what I’m really asking here, or if I’m just looking for a sounding board. At my appointment last month my haematologist told me my ET had now changed to MF, after a bmb and NSG testing. He also said I had markers for high risk for leukaemia. I didn’t ask what the markers
lizzziep
in
MPN Voice
11 months ago
Ability to work
Hi all, I am new to this forum. I am 39. I have been diagnosed with ET with JAK2 at the age of 27 and have been on aspirin since. Unfortunately, my platelet count went up to 1100 this year and my hemacritis increased as well. I did blood mass test in the spring and it was confirmed that I have PV.
Hi all, I am new to this forum. I am 39. I have been diagnosed with ET with JAK2 at the age of 27 and have been on aspirin since. Unfortunately, my platelet count went up to 1100 this year and my hemacritis increased as well. I did blood mass test in the spring and it was confirmed that I have PV.
JustKeepSw1mming
in
MPN Voice
11 months ago
paraesthesia with Peg
Hi there, Has anyone else experienced increasing paraesthesia /numbness in their hands and feet whilst taking Peg interferon ? Did these symptoms resolve or increase over time for you? I was taking 45 fortnightly for 15months,which kept the haematocrit very stable I came off the peg 5 months ago due
Hi there, Has anyone else experienced increasing paraesthesia /numbness in their hands and feet whilst taking Peg interferon ? Did these symptoms resolve or increase over time for you? I was taking 45 fortnightly for 15months,which kept the haematocrit very stable I came off the peg 5 months ago due
Bobadog
in
MPN Voice
11 months ago
Risks of Pegasus?
I'm 79, with ET and JAK2. At present I take 500mg Hydroxy and 4×0.5 Anagrelide daily. My platelet count is 660 and slowly rising. I asked my consultant about changing to Pegasys but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will
I'm 79, with ET and JAK2. At present I take 500mg Hydroxy and 4×0.5 Anagrelide daily. My platelet count is 660 and slowly rising. I asked my consultant about changing to Pegasys but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will
Sivasi
in
MPN Voice
11 months ago
Has anyone on Pegasus interferon had eye retina problems?
Well that’s my question. I keep wondering if Pegasus interferon would be a better medication for me rather than 9 hydroxycarbemide tablets per week for ET but now I’m worried about possible eye problems. Has anyone had retina problems on this drug? When a MPN specialist advises about interferon do they
Well that’s my question. I keep wondering if Pegasus interferon would be a better medication for me rather than 9 hydroxycarbemide tablets per week for ET but now I’m worried about possible eye problems. Has anyone had retina problems on this drug? When a MPN specialist advises about interferon do they
Na56
in
MPN Voice
11 months ago
Interferon Consideration Update
hi all, I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting Interferon as a youngish 41yr old low risk PV patient.. I’ve had a couple of consultations now spanning the last 3 months and discussed the potential
hi all, I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting Interferon as a youngish 41yr old low risk PV patient.. I’ve had a couple of consultations now spanning the last 3 months and discussed the potential
Steve_Essex
in
MPN Voice
11 months ago
Good news on mutant allele reduction on Jakafi.
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Sewingtime
in
MPN Voice
11 months ago
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