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diagnosed with Polycythemia Vera
Hi everyone It was confirmed yesterday that I have been diagnosed with Polycythemia Vera . They said 20% of my bone marrow has been affected. They are hopeful with interferon injections it can be managed . They said i would of had this for 5 years maybe 8 because my blood results have not been right
Hi everyone It was confirmed yesterday that I have been diagnosed with Polycythemia Vera . They said 20% of my bone marrow has been affected. They are hopeful with interferon injections it can be managed . They said i would of had this for 5 years maybe 8 because my blood results have not been right
Blonde25
in
MPN Voice
1 year ago
Update appointment
Hi all, Been on 90mg pegasys interferon alpha 4 weeks now ,no side effects apart from a little cold tired after I've inject myself,after few days a do feel good in myself,my tinglings are still here in my feet not such much in my hands comes and goes,still get slightly headaches which I take paracetamols
Hi all, Been on 90mg pegasys interferon alpha 4 weeks now ,no side effects apart from a little cold tired after I've inject myself,after few days a do feel good in myself,my tinglings are still here in my feet not such much in my hands comes and goes,still get slightly headaches which I take paracetamols
Jody00
in
MPN Voice
1 year ago
New question Can interferon injections cause High BP ?
Can interferon injections cause high BP ? Does anybody have high BP and can still use interferon ?
Can interferon injections cause high BP ? Does anybody have high BP and can still use interferon ?
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MPN Voice
1 year ago
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Besremi trial
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0 seconds of 8 minutes, 40 secondsDESCRIPTIONTRANSCRIPTDr. Mascarenhas: Hi, I'm John Mascarenhas, a professor of medicine at the Icahn School of Medicine
wateron
in
MPN Voice
1 year ago
No meds except warfrin
Hi is there anyone with PV been on hydroxy then pegusus interferon but due to negative side effects of both of these are currently taking warfrin only.Adiewon
Hi is there anyone with PV been on hydroxy then pegusus interferon but due to negative side effects of both of these are currently taking warfrin only.Adiewon
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MPN Voice
1 year ago
Peg Interferon 2b abd Hydroxy
Is anybody taking both together or can this happen when going to interferon from hydroxy ?
Is anybody taking both together or can this happen when going to interferon from hydroxy ?
Hidden
in
MPN Voice
1 year ago
Questions regarding pegylated interferon
Sorry if this has already been asked, I have done a search on here, but there are so many posts to wade through; it became a little boggling! I've just had a haematology appointment today and discussed several things, including my increase of very itchy skin (particularly on my back when showering).
Sorry if this has already been asked, I have done a search on here, but there are so many posts to wade through; it became a little boggling! I've just had a haematology appointment today and discussed several things, including my increase of very itchy skin (particularly on my back when showering).
LRH77
in
MPN Voice
1 year ago
Hydroxy v Interferon
Hello again, I wrote a post with same title 7 months ago and had a great and really helpful response and I want to thank you all. I had read and reread all your replies many times and have found them all incredibly supportive. I have had a pack of Pegasys in my fridge since November and TODAY is the
Hello again, I wrote a post with same title 7 months ago and had a great and really helpful response and I want to thank you all. I had read and reread all your replies many times and have found them all incredibly supportive. I have had a pack of Pegasys in my fridge since November and TODAY is the
RazB
in
MPN Voice
1 year ago
Interferon and CMR according to ChatGPT
”Interferon is a type of protein that is produced by the body's immune system in response to viral infections. It has been used as a treatment for certain types of cancer, including leukemia and lymphoma. While interferon therapy can help reduce the size of tumors and the number of cancer cells in the
”Interferon is a type of protein that is produced by the body's immune system in response to viral infections. It has been used as a treatment for certain types of cancer, including leukemia and lymphoma. While interferon therapy can help reduce the size of tumors and the number of cancer cells in the
Manouche
in
MPN Voice
1 year ago
Update 7.3 Good news this time
My HCT had been creeping up over time as my iron levels improved. 12/19 HCT=47.9% and HGB=15.5. Since it was now consistently above target for PV, time to do something. Unfortunately, the liver enzymes were close to 3x/upper limit of normal ALT=157, AST=94.0, ALP=211. We were all in agreement that
My HCT had been creeping up over time as my iron levels improved. 12/19 HCT=47.9% and HGB=15.5. Since it was now consistently above target for PV, time to do something. Unfortunately, the liver enzymes were close to 3x/upper limit of normal ALT=157, AST=94.0, ALP=211. We were all in agreement that
hunter5582
in
MPN Voice
1 year ago
Ruxolitinib/Pegylated Interferon Alpha 2a Reduces Spleen Length in Myelofibrosis
« Such deep molecular responses, to our knowledge, have never been seen in patients with myelofibrosis before,” Kiladjian noted » »A previously developed mathematical model for predicting long-term responses in patients with PV and ET was found to be applicable to this study and predicted a long-term
« Such deep molecular responses, to our knowledge, have never been seen in patients with myelofibrosis before,” Kiladjian noted » »A previously developed mathematical model for predicting long-term responses in patients with PV and ET was found to be applicable to this study and predicted a long-term
Manouche
in
MPN Voice
1 year ago
feeling quite fed up, is it possible that interferon doesn’t work for me?
hello everyone, I hope your all keeping well. Just after a bit of advice as I’m feeling quite frustrated. apologies for the long post…… I have ET, been on HU since I was 25 years (apart from 4 years when I had my children and was taking daily interferon injections) I’m now 42. I decided that I wanted
hello everyone, I hope your all keeping well. Just after a bit of advice as I’m feeling quite frustrated. apologies for the long post…… I have ET, been on HU since I was 25 years (apart from 4 years when I had my children and was taking daily interferon injections) I’m now 42. I decided that I wanted
Nickyanne
in
MPN Voice
2 years ago
New treatment
Hi ,started My new treatment yesterday 90mg pegasys interferon alpha injection in my stomach still take 1 aspirin aday,my platelets count just below 900 at moment says will take a,few weeks for it to work got few symptoms nothing major so far,going see me once a week for now to take bloods and see Dr
Hi ,started My new treatment yesterday 90mg pegasys interferon alpha injection in my stomach still take 1 aspirin aday,my platelets count just below 900 at moment says will take a,few weeks for it to work got few symptoms nothing major so far,going see me once a week for now to take bloods and see Dr
Jody00
in
MPN Voice
2 years ago
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
2 years 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
2 years 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
2 years ago
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
2 years 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
2 years 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
2 years 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
2 years ago
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