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Interferon alfa-2a
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Besremi check with RN
Hi, Today, I had a check-in with my HEM's RN because I've had two Besremi shots. While she was pleasant enough, several of her comments have continued to drag me down about taking Besremi, even having PV! Now, I'm one of two patients using Besremi in their office, but her comments such as: "let's
Hi, Today, I had a check-in with my HEM's RN because I've had two Besremi shots. While she was pleasant enough, several of her comments have continued to drag me down about taking Besremi, even having PV! Now, I'm one of two patients using Besremi in their office, but her comments such as: "let's
Elizka
in
MPN Voice
2 years ago
Stubborn platelets
At the start of treatment nearly 2 years ago my platelet count was 725, I was responding to hydroxy but struggling with side effects, the lowest they got 425, been on interferon for 9 months and last blood count was 623 . Just been on phone with haemo and she thinks the hydroxy would be better 😢. We
At the start of treatment nearly 2 years ago my platelet count was 725, I was responding to hydroxy but struggling with side effects, the lowest they got 425, been on interferon for 9 months and last blood count was 623 . Just been on phone with haemo and she thinks the hydroxy would be better 😢. We
ciye
in
MPN Voice
2 years ago
Paper on Misc Mutations
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in myelofibrosis compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in myelofibrosis compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
EPguy
in
MPN Voice
2 years ago
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Pegasys: oxidation (dividing a dose into two)
Hi! Does anyone know if Pegasys remains stable and biologically active if you divide the contents of a single syringe into two doses (by drawing off half of it into a new empty syringe). The question is - does interferon stay stable despite contact with oxygen and remains usable within one week?
Hi! Does anyone know if Pegasys remains stable and biologically active if you divide the contents of a single syringe into two doses (by drawing off half of it into a new empty syringe). The question is - does interferon stay stable despite contact with oxygen and remains usable within one week?
Dovakin
in
MPN Voice
2 years ago
Dr Silver, interferon and possible combos
See reference to NAC and statins near the bottom https://journals.lww.com/hemasphere/fulltext/2021/12000/new_perspectives_of_interferon_alpha2_and.7.aspx
See reference to NAC and statins near the bottom https://journals.lww.com/hemasphere/fulltext/2021/12000/new_perspectives_of_interferon_alpha2_and.7.aspx
Paul123456
in
MPN Voice
2 years ago
What to Know About Polycythemia Vera and Treatment Options
« For those that have not had a chance to use interferons, this is a little different experience than those that just used interferon in the distant past. I’m mindful. I interacted with many oncologists that they have bad memories of using high-dose interferon for chronic myeloid leukemia or even for
« For those that have not had a chance to use interferons, this is a little different experience than those that just used interferon in the distant past. I’m mindful. I interacted with many oncologists that they have bad memories of using high-dose interferon for chronic myeloid leukemia or even for
Manouche
in
MPN Voice
2 years ago
4th jab booster turbo update.
Despite getting pinged when I had the 4th booster I had some very good news today after my regular blood test. My antibodies have now taken off! Also my platelets are now down below 400 for the first time since starting interferon. Win win
Despite getting pinged when I had the 4th booster I had some very good news today after my regular blood test. My antibodies have now taken off! Also my platelets are now down below 400 for the first time since starting interferon. Win win
Jonnymitts
in
MPN Voice
2 years ago
Interferon beta 1b
Hola alguien sabe quién me podrá ayudar a conseguir tratamiento para esclerosis múltiple interferon beta 1b soy de México y nuestro seguro tiene más de 6 meses sin otorgarlo
Hola alguien sabe quién me podrá ayudar a conseguir tratamiento para esclerosis múltiple interferon beta 1b soy de México y nuestro seguro tiene más de 6 meses sin otorgarlo
Jesusensenadamexico
in
My MSAA Community
2 years ago
MPN and Covid vaxes
A popular question among us. This link I believe has two studies from 2021: This study may already be posted here, sorry if it's redundant. https://mpn-hub.com/medical-information/responses-to-mrna-sars-cov-2-vaccines-in-patients-with-mpn-findings-from-two-studies In the 1st study, with n=62: <<22.6%
A popular question among us. This link I believe has two studies from 2021: This study may already be posted here, sorry if it's redundant. https://mpn-hub.com/medical-information/responses-to-mrna-sars-cov-2-vaccines-in-patients-with-mpn-findings-from-two-studies In the 1st study, with n=62: <<22.6%
EPguy
in
MPN Voice
2 years ago
SIDE EFFECTS OF ANAGRELIDE
Update from previous post. Saw Haematologist yesterday, unable to have Interferon, only option open to me is Anagrelide. What are your experiences of this medication please. I'm ET JAk2, take Aspirin, 15 mg Prednisone and co codamol or similar pain relief for spinal stenosis. At present take Ruxolitinib
Update from previous post. Saw Haematologist yesterday, unable to have Interferon, only option open to me is Anagrelide. What are your experiences of this medication please. I'm ET JAk2, take Aspirin, 15 mg Prednisone and co codamol or similar pain relief for spinal stenosis. At present take Ruxolitinib
Heather270240
in
MPN Voice
2 years ago
Side effects of Anagrelide
A few weeks ago I posted a msg regarding side effects of Interferon and several of you very kindly replied. However today I saw my Haematologist who told me that for health reasons I could not have this medication and said the only option open to me is Anagrelide. I can't say I'm happy with this option
A few weeks ago I posted a msg regarding side effects of Interferon and several of you very kindly replied. However today I saw my Haematologist who told me that for health reasons I could not have this medication and said the only option open to me is Anagrelide. I can't say I'm happy with this option
Heather270240
in
Fight MPN
2 years ago
Two studies on INF vs Fibrosis, cellularity
A few 2017 studies I came across, likely some members have seen and posted before, here are some notes. Mostly more vagueness, but covers some of the marrow discussions we’ve recently had. -Items of note: -CMR was correlated to reduced cellularity while PMR may not be. -BM-CR or -PR helped prevent
A few 2017 studies I came across, likely some members have seen and posted before, here are some notes. Mostly more vagueness, but covers some of the marrow discussions we’ve recently had. -Items of note: -CMR was correlated to reduced cellularity while PMR may not be. -BM-CR or -PR helped prevent
EPguy
in
MPN Voice
2 years ago
Probiotics for Parkinson's disease: Current evidence and future directions 2020
So... I'm taking lactobacillus casei Shirota, which is both the probiotic used in the PD study that showed it helped with bowel movements and is also anti-inflammatory, anti-bacterial, anti-viral, and anti-fungal. It has been shown to reduce the EBV titers in your system too. If you think PD is autoimmune
So... I'm taking lactobacillus casei Shirota, which is both the probiotic used in the PD study that showed it helped with bowel movements and is also anti-inflammatory, anti-bacterial, anti-viral, and anti-fungal. It has been shown to reduce the EBV titers in your system too. If you think PD is autoimmune
Bolt_Upright
in
Cure Parkinson's
2 years ago
Side effects of Interferon
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Heather270240
in
MPN Voice
2 years ago
4th jab update.
I managed to crack the enigma code and was able to book a 4th jab at a local walk in centre on Sunday 9th so I didn’t have to go down the head banging route of trying to explain to my GP why I needed a 4th jab. I thought it would be a good idea to go early and avoid the rush. I was the second person
I managed to crack the enigma code and was able to book a 4th jab at a local walk in centre on Sunday 9th so I didn’t have to go down the head banging route of trying to explain to my GP why I needed a 4th jab. I thought it would be a good idea to go early and avoid the rush. I was the second person
Jonnymitts
in
MPN Voice
2 years ago
Starting Peg and Covid boosters
ET MPL here. Probably starting Pegasys shortly. Seeing Haematologist tomorrow. Should I be pushing for a 4th Covid jab. Had 3rd one in September. Also does interferon make you more prone to infection? Thanks
ET MPL here. Probably starting Pegasys shortly. Seeing Haematologist tomorrow. Should I be pushing for a 4th Covid jab. Had 3rd one in September. Also does interferon make you more prone to infection? Thanks
Sprat19
in
MPN Voice
2 years ago
Numbing cream ?
Hi everyone, Happy New Year to you all. My husband has to give me my interferon injection as I am a bit of a wimp to do it myself :-( ( which I could)sometimes it doesn’t hurt, but other times like just now it does, never sure how much to pinch the skin or not. Has anyone used a numbing cream?
Hi everyone, Happy New Year to you all. My husband has to give me my interferon injection as I am a bit of a wimp to do it myself :-( ( which I could)sometimes it doesn’t hurt, but other times like just now it does, never sure how much to pinch the skin or not. Has anyone used a numbing cream?
Yvette49
in
MPN Voice
2 years ago
Besremi approved. Not what?
Updated: 1/27/2022: Tomorrow is the day I start Besremi. I was dx with PV 4/15 (tax day in US) in 2015. Since then I've only had phlebotomies and taken aspirin. I've had no issues or challenges other than low ferritin which I believe contributed to my fatigue. I immediately upon dx began educating
Updated: 1/27/2022: Tomorrow is the day I start Besremi. I was dx with PV 4/15 (tax day in US) in 2015. Since then I've only had phlebotomies and taken aspirin. I've had no issues or challenges other than low ferritin which I believe contributed to my fatigue. I immediately upon dx began educating
Elizka
in
MPN Voice
2 years ago
Myelofibrosis diagnosis
Hi, I'm the wife of someone who has just been diagnosed with myelofibrosis , his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms. I've joined this forum to get as much information as possible to help us know what to expect from
Hi, I'm the wife of someone who has just been diagnosed with myelofibrosis , his haematologist said its at stage 2 of 4. He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms. I've joined this forum to get as much information as possible to help us know what to expect from
Mrswhyte2019
in
MPN Voice
3 years ago
Update 6.0
On the whole, news is quite good. Ongoing recovery from the brain surgery, resection of tumor in June 2019, is going well. The MRI on 12/15 looks really good. There is no sign of tumor recurrence. The visual symptoms post-surgery (acephalgic visual migraines/palinopsia) have been subsiding in frequency
On the whole, news is quite good. Ongoing recovery from the brain surgery, resection of tumor in June 2019, is going well. The MRI on 12/15 looks really good. There is no sign of tumor recurrence. The visual symptoms post-surgery (acephalgic visual migraines/palinopsia) have been subsiding in frequency
hunter5582
in
MPN Voice
3 years ago
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