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Interferon beta-1a
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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
Vitamin A and liver enzymes
I’ve been eating about 4 oz (115 grams?) of veal liver each day for the past week. I know it has nutrients that are healthy for the liver, but it’s also very high in vitamin A (I think I had about 25,000-30,000 IUs per day on those days). I’ve read that such doses can be damaging to the liver (and
I’ve been eating about 4 oz (115 grams?) of veal liver each day for the past week. I know it has nutrients that are healthy for the liver, but it’s also very high in vitamin A (I think I had about 25,000-30,000 IUs per day on those days). I’ve read that such doses can be damaging to the liver (and
JJgut
in
British Liver Trust
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
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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
Interferons as the First Choice of Cytoreduction in ET and PV
»Interferons are a group of cytokines with immunomodulatory properties and were the first immune therapies used in the treatment of cancers, including hematologic malignancies. Use of standard interferon alfa-2b for MPN treatment has been limited by its difficulty in administration and adverse effect
»Interferons are a group of cytokines with immunomodulatory properties and were the first immune therapies used in the treatment of cancers, including hematologic malignancies. Use of standard interferon alfa-2b for MPN treatment has been limited by its difficulty in administration and adverse effect
Manouche
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
Interferon or Anagrelide ?
Morning everyone . Having to decide between Peg or Anagrelide for my next consultation in October at Haemotology. Also my history has been discussed with Dr Claire Harrison at Guys . The decision is mine . I reacted badly to Hydroxy & taken off it . I appreciate we are all different but
Morning everyone . Having to decide between Peg or Anagrelide for my next consultation in October at Haemotology. Also my history has been discussed with Dr Claire Harrison at Guys . The decision is mine . I reacted badly to Hydroxy & taken off it . I appreciate we are all different but
Exeter21
in
MPN Voice
2 years ago
pegalated interferon and thyroid
hi all, I’ve been on interferon 45 weekly for about two years now, and have had an under active thyroid for about 10 years, treated and maintained successfully with thyroxine . About a month ago I noticed my thyroid was enlarged so went to GP and had a scan and blood tests. The scan is not showing
hi all, I’ve been on interferon 45 weekly for about two years now, and have had an under active thyroid for about 10 years, treated and maintained successfully with thyroxine . About a month ago I noticed my thyroid was enlarged so went to GP and had a scan and blood tests. The scan is not showing
SuET2017
in
MPN Voice
2 years ago
A new symptom with ET? And let down with Heam doc
Hi all, Another symptom I think I am experiencing is tingling or pin/needles in my finger ends but mainly in the morning. Is this a proper thing only you start getting a bit paranoid with all this? I went to see Heam doc last week and felt the appointment was very rushed, I found him hard to understand
Hi all, Another symptom I think I am experiencing is tingling or pin/needles in my finger ends but mainly in the morning. Is this a proper thing only you start getting a bit paranoid with all this? I went to see Heam doc last week and felt the appointment was very rushed, I found him hard to understand
Grendall
in
MPN Voice
2 years ago
ET and PV Treatments Are Moving Toward Disease Modification
« An improved understanding of these myeloproliferative neoplasms, including the identification of driver mutations in JAK2, CALR, and MPL, has opened the door to treatments that enable the natural history of these diseases to be altered » « There are preclinical data suggesting [that interferons suppress
« An improved understanding of these myeloproliferative neoplasms, including the identification of driver mutations in JAK2, CALR, and MPL, has opened the door to treatments that enable the natural history of these diseases to be altered » « There are preclinical data suggesting [that interferons suppress
Manouche
in
MPN Voice
2 years ago
itching with ET and frofenadine?
hi all, so I have just got back from my first hospital appointment and the Doc has told me to try the above for my uncontrollable itching!! He says give it a couple of weeks if not helping can add another antihistamine taken at night and if that doesn’t then will put me in interferon.. He says he doesn
hi all, so I have just got back from my first hospital appointment and the Doc has told me to try the above for my uncontrollable itching!! He says give it a couple of weeks if not helping can add another antihistamine taken at night and if that doesn’t then will put me in interferon.. He says he doesn
Grendall
in
MPN Voice
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
ET diagnosed at 85 yrs. Failed HU because of side effects but platelets down to 555. Considering age and quality of life issues..........
What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease per labs. Getting injections in the eye for macular degeneration. From my reading, he would be considered moderate category for ET. The Hematologist
What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease per labs. Getting injections in the eye for macular degeneration. From my reading, he would be considered moderate category for ET. The Hematologist
endlessfun
in
MPN Voice
2 years ago
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