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Interferon alfa-2a
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ET Hydroxy/short break - Update
I posted previously that I had temporarily suspended taking my Hydroxy with the agreement of my Haematologist. This was on 1st November 2022. On my telephone consultation two months later, after blood test , my platelets were acceptable at 314 and I continued without taking HU. However, I have just had
I posted previously that I had temporarily suspended taking my Hydroxy with the agreement of my Haematologist. This was on 1st November 2022. On my telephone consultation two months later, after blood test , my platelets were acceptable at 314 and I continued without taking HU. However, I have just had
azaelea
in
MPN Voice
1 year ago
Recombinant Interferon-β in the Treatment of Polycythemia Vera
Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood cancers characterized by elevated blood cell counts and, after decades, the development of bone marrow failure. Blood clots are common and contribute massively to the symptom burden. Treatment with interferon (IFN) alpha-2
Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood cancers characterized by elevated blood cell counts and, after decades, the development of bone marrow failure. Blood clots are common and contribute massively to the symptom burden. Treatment with interferon (IFN) alpha-2
Manouche
in
MPN Voice
1 year ago
Phase 2 Trial Tests Daxdilimab as Potential DLE Therapy
RECAST DLE targets skin disorder discoid lupus erythematosus by Steve Bryson PhD | January 5, 2023 The first patient has been enrolled in RECAST DLE, a Phase 2 study evaluating daxdilimab, a potentially first-in-class therapy for moderate-to-severe discoid lupus erythematosus (DLE), a form of lupus
RECAST DLE targets skin disorder discoid lupus erythematosus by Steve Bryson PhD | January 5, 2023 The first patient has been enrolled in RECAST DLE, a Phase 2 study evaluating daxdilimab, a potentially first-in-class therapy for moderate-to-severe discoid lupus erythematosus (DLE), a form of lupus
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
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Ventus to Advance cGAS Inhibitor as New Treatment for Lupus
VENT-03 targets cGAS protein implicated in autoimmune diseases by Lindsey Shapiro | January 9, 2023 Ventus Therapeutics plans to develop a new treatment candidate for lupus and other inflammatory diseases marked by the activation of the type 1 interferon immune system pathway, the company recently
VENT-03 targets cGAS protein implicated in autoimmune diseases by Lindsey Shapiro | January 9, 2023 Ventus Therapeutics plans to develop a new treatment candidate for lupus and other inflammatory diseases marked by the activation of the type 1 interferon immune system pathway, the company recently
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
Hairloss
I read posts on this site everyday and it's been so good to hear other stories and advice. Thank you all. Does anyone else suffer from severe hair loss as a result of taking Hydroxycarbamide? Mine's nearly all gone now and I have to wear a wig, which I hate doing. I've discussed with my consultant and
I read posts on this site everyday and it's been so good to hear other stories and advice. Thank you all. Does anyone else suffer from severe hair loss as a result of taking Hydroxycarbamide? Mine's nearly all gone now and I have to wear a wig, which I hate doing. I've discussed with my consultant and
Sivasi
in
MPN Voice
1 year ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
1 year ago
Hello hello friends all the best for 2023.
I just need to say it out loud I FEEL SUCH A FAILURE. After the challengin time l had on Hydroxy I was determined l would cope with side effects from Pegusus Interferon low dose. This appears not to be the case so far 5 injections in, l have such pain usually in the trapezius /sternocleidomastoid
I just need to say it out loud I FEEL SUCH A FAILURE. After the challengin time l had on Hydroxy I was determined l would cope with side effects from Pegusus Interferon low dose. This appears not to be the case so far 5 injections in, l have such pain usually in the trapezius /sternocleidomastoid
Hidden
in
MPN Voice
1 year ago
Prof Harrison discussing significance of reducing % JAK2 AB
Many of us believe that using interferons to reduce JAK2 AB can yield a significant prognostic benefit for some. However it appears that this may also apply to Ruxo although whether to the same extent? https://youtu.be/WifYlSTmWn4
Many of us believe that using interferons to reduce JAK2 AB can yield a significant prognostic benefit for some. However it appears that this may also apply to Ruxo although whether to the same extent? https://youtu.be/WifYlSTmWn4
Paul123456
in
MPN Voice
1 year ago
HRT and Peg Interferon
hi I have PV diagnosed 7 years ago and started 2 months ago on Peg Interferon 90mcg Just wondering if anyone has thoughts or experience of being on HRT whilst taking interferon ? I have a heavy symptom burden which my current haem consultant feels maybe post menopause related ie hormones Thanks
hi I have PV diagnosed 7 years ago and started 2 months ago on Peg Interferon 90mcg Just wondering if anyone has thoughts or experience of being on HRT whilst taking interferon ? I have a heavy symptom burden which my current haem consultant feels maybe post menopause related ie hormones Thanks
Sanga
in
MPN Voice
2 years ago
Hello friend
Thanks for your insights about interferon very much appreciated and l will certainly read about the side effects of both myalgia and arthralgia. I'm happy to say my white blood cell count has finally returned to normal rage, and lm experiencing a major reduction in inflammation.It's true to say
Thanks for your insights about interferon very much appreciated and l will certainly read about the side effects of both myalgia and arthralgia. I'm happy to say my white blood cell count has finally returned to normal rage, and lm experiencing a major reduction in inflammation.It's true to say
Hidden
in
MPN Voice
2 years ago
Starting Pegasys Friday
Currently on Hydroxurea (1500mg per day) and transitioning to interferon on Friday. The plan is to still take one pill of Hydrea a day and start with an interferon dose of 45mcg. I'm staying positive because I'm 38 years old and I think this will benefit me in the long run when it comes to side effects
Currently on Hydroxurea (1500mg per day) and transitioning to interferon on Friday. The plan is to still take one pill of Hydrea a day and start with an interferon dose of 45mcg. I'm staying positive because I'm 38 years old and I think this will benefit me in the long run when it comes to side effects
Zeppelin11
in
MPN Voice
2 years ago
Pv and Pegusus interferon
Hello my dears lm struggling with body pain and it's been suggested to me that Ayurveda massage may help. Has anyone had this kind of massage is it OK ?Adiewon
Hello my dears lm struggling with body pain and it's been suggested to me that Ayurveda massage may help. Has anyone had this kind of massage is it OK ?Adiewon
Hidden
in
Women's Health
2 years ago
Pegusus Interferon
Hello hello MPN friends l have not been on the site for awhile as l began new meds interferon ten weeks ago and at the time needed to sit quitley with what this means for me. Three weeks in l struggled with intense migraine and spent most of my time on pain killers with my duvet over my head. The
Hello hello MPN friends l have not been on the site for awhile as l began new meds interferon ten weeks ago and at the time needed to sit quitley with what this means for me. Three weeks in l struggled with intense migraine and spent most of my time on pain killers with my duvet over my head. The
Hidden
in
MPN Voice
2 years ago
MPN Voice Christmas message 2022
Hello everyone It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing year, we started off the year with some uncertainty and trepidation about COVID and end it on a much more positive note. With the easing of the COVID restrictions life was able
Hello everyone It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing year, we started off the year with some uncertainty and trepidation about COVID and end it on a much more positive note. With the easing of the COVID restrictions life was able
Mazcd
MPNVoice
in
MPN Voice
2 years ago
dizzy, ET , aspirin and Peg interferon
Every so often I get bouts of dizziness. Often associated with nasal congestion so. I think it could be ear related. I am on Aspirin and pegasys. I have MPL ET. Could it be ET related ?? Any ideas.
Every so often I get bouts of dizziness. Often associated with nasal congestion so. I think it could be ear related. I am on Aspirin and pegasys. I have MPL ET. Could it be ET related ?? Any ideas.
Sprat19
in
MPN Voice
2 years ago
would it matter if
hi everyone, we are spending Xmas in Italy for a couple of days, and just wondering…..if our flight back hits and cancellations coming back, would it matter if my interferon pegasys injections was delayed by a day or so? have a great Christmas everyone….
hi everyone, we are spending Xmas in Italy for a couple of days, and just wondering…..if our flight back hits and cancellations coming back, would it matter if my interferon pegasys injections was delayed by a day or so? have a great Christmas everyone….
Yvette49
in
MPN Voice
2 years ago
nausea feeling but in throat
just wanted to ask, over the last couple of days I have a ‘sicky feeling’ but in my throat. It’s like any food I have eaten has not gone down and is stuck in my throat as though you are going to be sick from it…. Not sure if it’s in relation to any other medication I take but not started any new meds
just wanted to ask, over the last couple of days I have a ‘sicky feeling’ but in my throat. It’s like any food I have eaten has not gone down and is stuck in my throat as though you are going to be sick from it…. Not sure if it’s in relation to any other medication I take but not started any new meds
Grendall
in
MPN Voice
2 years ago
Christmas Chuckle
Holiday time is for feasting; We look forward to each treat. The tables are full of our favorite foods; We’ve got lots of good things to eat. We scarf marshmallowed sweet potatoes; There’s cider and eggnog to slurp. There’s so much going down at once, Who can help an occasional burp? Here’
Holiday time is for feasting; We look forward to each treat. The tables are full of our favorite foods; We’ve got lots of good things to eat. We scarf marshmallowed sweet potatoes; There’s cider and eggnog to slurp. There’s so much going down at once, Who can help an occasional burp? Here’
Paul_and_Sue_Wood
in
Multiple System Atrophy Trust
2 years ago
Itchy patches
Since jabbing myself with Pegasys interferon alfa2a for CALR +ET diagnosis, I've noticed the appearance of several small itchy patches on my abdomen and back. The ones on the abdomen are not on the site of the jab. My GP prescribed the application of a moderate steroid cream and one other non-steroid
Since jabbing myself with Pegasys interferon alfa2a for CALR +ET diagnosis, I've noticed the appearance of several small itchy patches on my abdomen and back. The ones on the abdomen are not on the site of the jab. My GP prescribed the application of a moderate steroid cream and one other non-steroid
gilded
in
MPN Voice
2 years ago
Update 7.1 - Very Good News
Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele Frequency.
JAK2 V617F Mutation Analysis by Real-time PCR
INTERPRETATION: T
he Quantitative Real-Time PCR assay is positive for V617F JAK2 mutation and mutant V617F JAK2 represents
9% of total JAK2 alleles
Very good news from the Quantitative Analysis regarding JAK2v617f Variant Allele Frequency.
JAK2 V617F Mutation Analysis by Real-time PCR
INTERPRETATION: T
he Quantitative Real-Time PCR assay is positive for V617F JAK2 mutation and mutant V617F JAK2 represents
9% of total JAK2 alleles
hunter5582
in
MPN Voice
2 years ago
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