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Interferon alfa-2a
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PEGASYS and Besremi Site injection pain
Hi guys, Has anyone else experienced immense injection site pain from Interferon? I have had PV for about 10 years or so now and was just last year in Feb 2021 formally diagnosed with it. My white blood count has been extremely high for that duration. No one really looked into PV or any MPN because
Hi guys, Has anyone else experienced immense injection site pain from Interferon? I have had PV for about 10 years or so now and was just last year in Feb 2021 formally diagnosed with it. My white blood count has been extremely high for that duration. No one really looked into PV or any MPN because
S_anth
in
MPN Voice
2 years ago
Another week and another issue with my consultant
After my infuriating visit to the consultant last week, I got an infuriating letter from them. It has sent me into a fit of rage. Not only is it completely unreadable and lists lots of analysis that was not mentioned to me or explained, but the opposite word to the correct one has been used - which I
After my infuriating visit to the consultant last week, I got an infuriating letter from them. It has sent me into a fit of rage. Not only is it completely unreadable and lists lots of analysis that was not mentioned to me or explained, but the opposite word to the correct one has been used - which I
Fjdjdjdjd
in
MPN Voice
2 years ago
Allele burden shock
During the visit with the MPN consultant yesterday to organise going on Pegasys, I found out the results of my JAK2 allele burden test: 79% ! I am shocked. Consider that I am practically symptom-free. Not sure how to interpret this and am trying to be very rational and calm, but I must admit
During the visit with the MPN consultant yesterday to organise going on Pegasys, I found out the results of my JAK2 allele burden test: 79% ! I am shocked. Consider that I am practically symptom-free. Not sure how to interpret this and am trying to be very rational and calm, but I must admit
Aldebaran25
in
MPN Voice
2 years ago
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will I tolerate Hydroxy after interferon?
hello everyone. After having given Interferon for ET a good go, I haven’t been able to continue on it. Currently just on aspirin awaiting next blood results to see if I need medication again after a 10 month break. Dr’s are planning on Hydroxy…. i’m worried that if I didn’t tolerate IFN I won’t tolerate
hello everyone. After having given Interferon for ET a good go, I haven’t been able to continue on it. Currently just on aspirin awaiting next blood results to see if I need medication again after a 10 month break. Dr’s are planning on Hydroxy…. i’m worried that if I didn’t tolerate IFN I won’t tolerate
Baimead
in
MPN Voice
2 years ago
Litifilimab Shown to Reduce Number of Swollen Joints in Phase 2 Trial
September 12, 2022 litifilimab reduces number of swollen joints in LILAC trial | Lupus News Today | joint pain illustration of man lying on couch with ice on knee Litifilimab (BIIB059), Biogen’s investigational antibody-based treatment for systemic lupus erythematosus (SLE), significantly reduced the
September 12, 2022 litifilimab reduces number of swollen joints in LILAC trial | Lupus News Today | joint pain illustration of man lying on couch with ice on knee Litifilimab (BIIB059), Biogen’s investigational antibody-based treatment for systemic lupus erythematosus (SLE), significantly reduced the
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Help just been seen by consultant
hello all. Had Et for 12 years Interferon for 11 years Asprin. The last 12 months i have been off interferon for 1 year platlets normal range. Today consultant said he wanted to check jk2 again 12 years ago was positive ? Wanting to do scan of my spleen Asked questions about my bone marrow biopsy
hello all. Had Et for 12 years Interferon for 11 years Asprin. The last 12 months i have been off interferon for 1 year platlets normal range. Today consultant said he wanted to check jk2 again 12 years ago was positive ? Wanting to do scan of my spleen Asked questions about my bone marrow biopsy
Jbut
in
MPN Voice
2 years ago
Bone marrow result - cryptic
Hi All. I have ET, and I had a bone marrow biopsy in June. I haven't had the formal results back in a letter from my consultant. The GP told me there was a note that said confirm ET but he didn't understand the rest of the results (literally what he said). I had my regular blood check up with the consultant
Hi All. I have ET, and I had a bone marrow biopsy in June. I haven't had the formal results back in a letter from my consultant. The GP told me there was a note that said confirm ET but he didn't understand the rest of the results (literally what he said). I had my regular blood check up with the consultant
Fjdjdjdjd
in
MPN Voice
2 years ago
Tingling Toes
Hi hope you are all well. I have been diagnosed with Pre Myelofibrosis from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For the last few weeks I have moved had tingling Toes nad and my 2 big toes are painful. Is this symptoms will it improve on its own. Some days it
Hi hope you are all well. I have been diagnosed with Pre Myelofibrosis from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For the last few weeks I have moved had tingling Toes nad and my 2 big toes are painful. Is this symptoms will it improve on its own. Some days it
JeniMac
in
MPN Voice
2 years ago
Chronic Belly Bloating on Hydrea
Hi All, I've been on hydrea (hydoxycarbamide 500mg) for about 20 mths now. Platelets are normal, so my dose is reduced to 500mg daily. I am still suffering with chronic tummy bloat. For someone who is normally slim, it's annoying to be burdened with a balloon tummy. It has added about 2 kg of weight
Hi All, I've been on hydrea (hydoxycarbamide 500mg) for about 20 mths now. Platelets are normal, so my dose is reduced to 500mg daily. I am still suffering with chronic tummy bloat. For someone who is normally slim, it's annoying to be burdened with a balloon tummy. It has added about 2 kg of weight
Hidden
in
MPN Voice
2 years ago
Choice of treatment
hi everyone, I would be grateful for some advice Following my PV diagnosis in May with haematocrit over 70% and haemoglobin over 200 my treatment with venesection 2 pints a week for the first 5 weeks then periodically, none for 8 weeks, along with daily dose of 500mg hydroxycarbamide and aspirin 75mg
hi everyone, I would be grateful for some advice Following my PV diagnosis in May with haematocrit over 70% and haemoglobin over 200 my treatment with venesection 2 pints a week for the first 5 weeks then periodically, none for 8 weeks, along with daily dose of 500mg hydroxycarbamide and aspirin 75mg
Swim360
in
MPN Voice
2 years ago
What and Why is IFN Pegylation?
I found this report that has a particularly clear concept illustration of IFN and pegylation. https://www.futuremedicine.com/doi/10.2217/fon-2022-0596 Nothing actionable here, but just for info for the curious types. -- This image shows Besremi. The actual IFN is the green part. This is essentially
I found this report that has a particularly clear concept illustration of IFN and pegylation. https://www.futuremedicine.com/doi/10.2217/fon-2022-0596 Nothing actionable here, but just for info for the curious types. -- This image shows Besremi. The actual IFN is the green part. This is essentially
EPguy
in
MPN Voice
2 years ago
pre fibrotic myelofibrosis
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
JeniMac
in
MPN Voice
2 years ago
I’m falling to bits!!! Shingles now
hi all, Well update on me is that I have just started and had my first interferon injection for my ET on Thursday as I am suffering with various systems but my two main ones being fatigue and intense itching. On the Tuesday of this week I was suffering with major toothache from the weekend so managed
hi all, Well update on me is that I have just started and had my first interferon injection for my ET on Thursday as I am suffering with various systems but my two main ones being fatigue and intense itching. On the Tuesday of this week I was suffering with major toothache from the weekend so managed
Grendall
in
MPN Voice
2 years ago
interferon resistant
I was on pegasys(max dose) for 3 years with hydrea and now on besremi since April with titration of hydrea. Since off hydrea my numbers have been creeping up. I think I'm one of those that are semi-resistant to interferons. Can you continue to use hydrea with besremi? Someone had posted the genetics
I was on pegasys(max dose) for 3 years with hydrea and now on besremi since April with titration of hydrea. Since off hydrea my numbers have been creeping up. I think I'm one of those that are semi-resistant to interferons. Can you continue to use hydrea with besremi? Someone had posted the genetics
yippinurse
in
MPN Voice
2 years ago
MPN specialist
Got a second look from an mpn specialist yesterday here in Houston, TX and I am glad I took Hunter’s advice. I was happy with my hemo but just couldn’t get behind the idea of taking hydrea for 30+ years (God willing.) I was told that if treatment ever becomes indicated for me, interferons would be
Got a second look from an mpn specialist yesterday here in Houston, TX and I am glad I took Hunter’s advice. I was happy with my hemo but just couldn’t get behind the idea of taking hydrea for 30+ years (God willing.) I was told that if treatment ever becomes indicated for me, interferons would be
dbus1417
in
MPN Voice
2 years ago
Litifilimab Lessens Skin Disease Activity in Lupus, Trial Data Show
Litifilimab Lessens Skin Disease Activity in Lupus, Trial Data ShowTherapy known as BIIB059 led to 'huge improvements,' researchers say: Marta Figueiredo, PhD | August 22, 2022 Biogen’s experimental therapy litifilimab, also called BIIB059, significantly reduced skin disease activity in adults with
Litifilimab Lessens Skin Disease Activity in Lupus, Trial Data ShowTherapy known as BIIB059 led to 'huge improvements,' researchers say: Marta Figueiredo, PhD | August 22, 2022 Biogen’s experimental therapy litifilimab, also called BIIB059, significantly reduced skin disease activity in adults with
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Mechanism Discovered Behind Strongest Lupus Genetic Risk
FactorFindings could help develop potential treatments, senior author of study. Marta Figueiredo, PhD | August 18, 2022 The strongest genetic risk factor of systemic lupus erythematosus (SLE), HLA-DRB1*03:01, generates an abnormal protein that, in the presence of the pro-inflammatory interferon
FactorFindings could help develop potential treatments, senior author of study. Marta Figueiredo, PhD | August 18, 2022 The strongest genetic risk factor of systemic lupus erythematosus (SLE), HLA-DRB1*03:01, generates an abnormal protein that, in the presence of the pro-inflammatory interferon
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Inflammation and Fatigue
68 yo F, with ET , Jak2 mutation, on interferon 45ug every 10 days. I have only been this fatigued once before and I had pneumonia. It definitely started when I went on interferon. I am in hematological remission so don't want to stop. Do any of you on interferon every 2 weeks find that it made a
68 yo F, with ET , Jak2 mutation, on interferon 45ug every 10 days. I have only been this fatigued once before and I had pneumonia. It definitely started when I went on interferon. I am in hematological remission so don't want to stop. Do any of you on interferon every 2 weeks find that it made a
Planti
in
MPN Voice
2 years ago
Update 6.9 Good News - New Old News
The Good News is that all CBC and CMP on 08/16 numbers are looking good. HCT=43.9% PLT = 294 (lowest I can remember seeing) NEUT = 1.79 (WNL) LYMPH = 0.68 (low but acceptable) ALT 07/05=60(H) 08/16=43 (WNL) AST 07/05=53.0(H) 08/16=34.0 (33.9=WNL) So a brief blip up an the liver enzymes that
The Good News is that all CBC and CMP on 08/16 numbers are looking good. HCT=43.9% PLT = 294 (lowest I can remember seeing) NEUT = 1.79 (WNL) LYMPH = 0.68 (low but acceptable) ALT 07/05=60(H) 08/16=43 (WNL) AST 07/05=53.0(H) 08/16=34.0 (33.9=WNL) So a brief blip up an the liver enzymes that
hunter5582
in
MPN Voice
2 years ago
Pegasus interferon covered by Insurance
I have been on Hydroxyurea for 20 months and am really feeling fatigued and ache all over. I am considering asking my MPN Specialist to put me on Pegasus. My concern is the cost. I live in Alabama and have Humana prescription insurance and am on Medicare. Does anyone know if it is covered by insurance
I have been on Hydroxyurea for 20 months and am really feeling fatigued and ache all over. I am considering asking my MPN Specialist to put me on Pegasus. My concern is the cost. I live in Alabama and have Humana prescription insurance and am on Medicare. Does anyone know if it is covered by insurance
Auggie17
in
MPN Voice
2 years ago
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