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Experiences with
Interferon beta-1a
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Interferon and Hypothyroidism
I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My consultant now says they need to be under control and as I have declined increasing the HU has mentioned interferon. I have said I will think about it
I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My consultant now says they need to be under control and as I have declined increasing the HU has mentioned interferon. I have said I will think about it
jodary
in
MPN Voice
9 months ago
Big Question
I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year). I have never had an official allele burden as it is not available here. Though I did send saliva and nail clippings to the study in California on familial MPNs under Dr. Angela Fleischman. She could
I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year). I have never had an official allele burden as it is not available here. Though I did send saliva and nail clippings to the study in California on familial MPNs under Dr. Angela Fleischman. She could
Planti
in
MPN Voice
9 months ago
Osteoporosis and PV
Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI showed sacral fractures ,which had caused quite severe back pain for sometime. I am about to start taking Ruxolitinib for my PV.(Unfortunately Peg interferon caused paraesthesia + after taking it for 18months,so I stopped
Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI showed sacral fractures ,which had caused quite severe back pain for sometime. I am about to start taking Ruxolitinib for my PV.(Unfortunately Peg interferon caused paraesthesia + after taking it for 18months,so I stopped
Bobadog
in
MPN Voice
9 months ago
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Interferon effects
Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly. Before Pegasys my platelets were close to 600 and HCT around 0.55 Today my platelets dropped to 297 and HCT to 0.47 in just 5 or 6 weeks. Should I be happy or concern for fast adjustment ? I thought interferon achieves
Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly. Before Pegasys my platelets were close to 600 and HCT around 0.55 Today my platelets dropped to 297 and HCT to 0.47 in just 5 or 6 weeks. Should I be happy or concern for fast adjustment ? I thought interferon achieves
kamiilos
in
MPN Voice
9 months ago
Starting Interferon - advice please
Hi everyone.. I would really appreciate some advice and benefit of your experiences. I am just about to start on interferon, lowest dose fortnightly 45mcg. I am interested in knowing what people's experience with side effects has been and how quickly these might have settled down. Also how quickly
Hi everyone.. I would really appreciate some advice and benefit of your experiences. I am just about to start on interferon, lowest dose fortnightly 45mcg. I am interested in knowing what people's experience with side effects has been and how quickly these might have settled down. Also how quickly
Mrs_Average
in
MPN Voice
9 months ago
Outcome after 4 years of weekly Pegasys injections for PV.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Manouche
in
MPN Voice
9 months ago
Beta-2 microglobulin
Hi,Has anyone experienced an increase in Beta-2 microglobulin value during the treatment with interferon? If yes, has been confirmed by MD that it is caused by interferon? Thank you in advance for your answers.
Hi,Has anyone experienced an increase in Beta-2 microglobulin value during the treatment with interferon? If yes, has been confirmed by MD that it is caused by interferon? Thank you in advance for your answers.
Dane12
in
MPN Voice
9 months ago
beta sitosterol
Just ordered some beta sitosterol and fenbendazole. Coupling these with Ivermectin, melatonin , Lupron and abiraterone. Anyone with any success with these?
Just ordered some beta sitosterol and fenbendazole. Coupling these with Ivermectin, melatonin , Lupron and abiraterone. Anyone with any success with these?
Nowhereman9
in
Advanced Prostate Cancer
10 months ago
Driving myself Crazy,,, Genetic results
So I did the BlueHorizon genetic results posted for some reason on PA page 🤯, https://healthunlocked.com/pasoc/posts/149956199/genetic-test-results maybe not a good day for revisiting this having serious head wobble. I am confused, DIO1 rs 2235544 AA, normal not increased activity ,
So I did the BlueHorizon genetic results posted for some reason on PA page 🤯, https://healthunlocked.com/pasoc/posts/149956199/genetic-test-results maybe not a good day for revisiting this having serious head wobble. I am confused, DIO1 rs 2235544 AA, normal not increased activity ,
Polo22
in
Thyroid UK
10 months ago
Coincidence or not?
After some female advice please. I am 45 and would like to know if anyone has experienced the same as me please. Diagnosed ET May 2017, started on Hydroxycabamide June 2018 and switched to Interferon in May this year. Whilst I was taking Hydroxy I had no periods for around 4 years, since coming off
After some female advice please. I am 45 and would like to know if anyone has experienced the same as me please. Diagnosed ET May 2017, started on Hydroxycabamide June 2018 and switched to Interferon in May this year. Whilst I was taking Hydroxy I had no periods for around 4 years, since coming off
beckyluck
in
MPN Voice
10 months ago
PV and essential oils
Hi allJust wondering if I can take essential oils to help with my mood and menopause whilst taking interferon for PV. Anyone any experience of this and whether certain oils interact with interferon? Many thanks
Hi allJust wondering if I can take essential oils to help with my mood and menopause whilst taking interferon for PV. Anyone any experience of this and whether certain oils interact with interferon? Many thanks
MazzaP74
in
Fight MPN
10 months ago
PV and essential oils
Hi allJust wondering if I can take essential oils to help with my mood and menopause whilst taking interferon for PV. Anyone any experience of this and whether certain oils interact with interferon? Many thanks
Hi allJust wondering if I can take essential oils to help with my mood and menopause whilst taking interferon for PV. Anyone any experience of this and whether certain oils interact with interferon? Many thanks
MazzaP74
in
MPN Voice
10 months ago
Damaged mitochondrial DNA fragments may spread throughout brain in sPD and sPDD
https://medicalxpress.com/news/2023-10-mitochondrial-dna-triggers-parkinson-disease-like.html Study: https://www.nature.com/articles/s41380-023-02251-4 Abstract:[i] "In the field of neurodegenerative diseases, especially sporadic Parkinson’s disease (sPD) with dementia (sPDD), the question of how the
https://medicalxpress.com/news/2023-10-mitochondrial-dna-triggers-parkinson-disease-like.html Study: https://www.nature.com/articles/s41380-023-02251-4 Abstract:[i] "In the field of neurodegenerative diseases, especially sporadic Parkinson’s disease (sPD) with dementia (sPDD), the question of how the
genesurf
in
Cure Parkinson's
10 months ago
Supplements - Dangerous, Essential or Useless?
Wizard recently made an interesting post on the "drive to minimize supplementation" that I wanted to respond to in-depth. The post: https://healthunlocked.com/pasoc/posts/150006558/the-drive-to-reduce-minimize-supplementation I decided a long form response would be better, thus my separate post here.
Wizard recently made an interesting post on the "drive to minimize supplementation" that I wanted to respond to in-depth. The post: https://healthunlocked.com/pasoc/posts/150006558/the-drive-to-reduce-minimize-supplementation I decided a long form response would be better, thus my separate post here.
Technoid
in
Pernicious Anaemia Society
10 months ago
Still waiting …
Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal mail) about 3 weeks ago, however Professor Harrison says they haven’t received anything yet. I rang my specialist nurse and asked if it had been sent
Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal mail) about 3 weeks ago, however Professor Harrison says they haven’t received anything yet. I rang my specialist nurse and asked if it had been sent
lizzziep
in
MPN Voice
10 months ago
Trouble getting interferon?
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
Owl-fan
in
MPN Voice
10 months ago
A bit disappointed
I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been on peg interferon for 8 weeks. However, I requested quite a few weeks ago for referral to Professor Harrison at Guys, my doctor was reluctant
I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been on peg interferon for 8 weeks. However, I requested quite a few weeks ago for referral to Professor Harrison at Guys, my doctor was reluctant
lizzziep
in
MPN Voice
10 months ago
Decisions, decisions
I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to AML, but it would probably be a few years. I asked to be referred to Professor Harrison, I have asked for this at each appointment. I managed
I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to AML, but it would probably be a few years. I asked to be referred to Professor Harrison, I have asked for this at each appointment. I managed
lizzziep
in
MPN Voice
10 months ago
platelet action level
hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45
hi all, I have been diagnosed with PV about two years ago. My consultant recommends that they monitor my blood level and treat it with venesection and a daily dose of aspirin. Steadily my platelet count has been rising towards 1000 while my haematocrit has remained steady below the threshold of 0.45
STK52
in
MPN Voice
11 months ago
COVID and Pegylated Interferon
At my last Haematology appointment the Dr told me that Interferon helps strengthen the immune system. I have also read that Interferon has been given to some patients with COVID to help with their recovery. I therefore wonder if the latest upcoming booster vaccination is required. Does anyone have
At my last Haematology appointment the Dr told me that Interferon helps strengthen the immune system. I have also read that Interferon has been given to some patients with COVID to help with their recovery. I therefore wonder if the latest upcoming booster vaccination is required. Does anyone have
AnitaJ
in
MPN Voice
11 months ago
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