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Interferon beta-1a
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Aching throbbing hips and legs and feeling tired
Hi everyone Does anyone else who has polycythemia Vera experience throbbing in their hips and legs and feeling tired I've been having this for a while and having to take pain relief . Im hoping the interferon injection will start to kick in Thanks in advance
Hi everyone Does anyone else who has polycythemia Vera experience throbbing in their hips and legs and feeling tired I've been having this for a while and having to take pain relief . Im hoping the interferon injection will start to kick in Thanks in advance
Blonde25
in
MPN Voice
1 year ago
peg dosage raised-
Hi Hi platelets haven’t been dropping and now at 1800. Taking two aspirins and interferon peg for 2 months at 180 weekly dosage. Dr has now raised to 1 x 180 shot and mid week 135 shot. Has anyone else done this? Have you gad many sideaffects? . How long til numbers start dropping. My son is 19
Hi Hi platelets haven’t been dropping and now at 1800. Taking two aspirins and interferon peg for 2 months at 180 weekly dosage. Dr has now raised to 1 x 180 shot and mid week 135 shot. Has anyone else done this? Have you gad many sideaffects? . How long til numbers start dropping. My son is 19
Maccamum
in
MPN Voice
1 year ago
Dry scalp/skin - ET & Interferon
Hi all,I'm 27, female and was diagnosed with CALR ET 3 years ago. I've been having Pegasys interferon for 2 years. I've always had a tendency for dry skin... not particularly bad... and all my life this has been managed with moisterisers. Over the last year I've noticed a deterioration in my skin in
Hi all,I'm 27, female and was diagnosed with CALR ET 3 years ago. I've been having Pegasys interferon for 2 years. I've always had a tendency for dry skin... not particularly bad... and all my life this has been managed with moisterisers. Over the last year I've noticed a deterioration in my skin in
cgcheets
in
MPN Voice
1 year ago
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Haematology Appointment Update
I’ve seen the haematologist in person this afternoon - first time in clinic for over 3 years. It was a new doctor, not seen him before. He said he wasn’t 100% sure about the ET diagnosis, first given over 13 years ago. As I haven’t got the JAK2 mutation, plus other counts ok. My bone marrow biopsy showed
I’ve seen the haematologist in person this afternoon - first time in clinic for over 3 years. It was a new doctor, not seen him before. He said he wasn’t 100% sure about the ET diagnosis, first given over 13 years ago. As I haven’t got the JAK2 mutation, plus other counts ok. My bone marrow biopsy showed
lizzziep
in
MPN Voice
1 year ago
A Conversation with an MPN Specialist: Interferon: Why and How it Works in MPN Patients
I found this great Youtube video - https://youtu.be/rHnj1Q-T1FE. Fantastic information in the Q&A section as well. Well worth the watch. Answered many questions.
I found this great Youtube video - https://youtu.be/rHnj1Q-T1FE. Fantastic information in the Q&A section as well. Well worth the watch. Answered many questions.
RyanCB
in
MPN Voice
1 year ago
Why isn’t interferon alpha working for me?
my platelet count is 1240. I have been injecting interferon alpha 90mg for 8 weeks , 2 blood tests 4 weeks apart showed a reduction of 3 and 17, total 20 in 2 months. My consultant is increasing my dose from this week to 180mg with blood test in 4 weeks time, why isn’t interferon working for me when
my platelet count is 1240. I have been injecting interferon alpha 90mg for 8 weeks , 2 blood tests 4 weeks apart showed a reduction of 3 and 17, total 20 in 2 months. My consultant is increasing my dose from this week to 180mg with blood test in 4 weeks time, why isn’t interferon working for me when
Maxamber
in
MPN Voice
1 year ago
Anaemia- CALR+ET
The Consultant Haematologist(NHS) has told me that recent blood tests indicate anaemia. Haemaglobin level 110x10gl. He doesn’t consider this is caused by interferon. He has ordered further haematinic assays. I eat a balanced diet so can’t understand why I’m anaemic- never have been. Would welcome
The Consultant Haematologist(NHS) has told me that recent blood tests indicate anaemia. Haemaglobin level 110x10gl. He doesn’t consider this is caused by interferon. He has ordered further haematinic assays. I eat a balanced diet so can’t understand why I’m anaemic- never have been. Would welcome
gilded
in
MPN Voice
1 year ago
IFN-1 levels before treatment may be biomarker of SLE activity: Study
High levels in lupus linked to fever, risk of future organ damage by Steve Bryson PhD | February 27, 2023 The activity of a class of immune signaling proteins known as type I interferons — called IFN-1 — was markedly high in the bloodstream of people with systemic lupus erythematosus (SLE) before
High levels in lupus linked to fever, risk of future organ damage by Steve Bryson PhD | February 27, 2023 The activity of a class of immune signaling proteins known as type I interferons — called IFN-1 — was markedly high in the bloodstream of people with systemic lupus erythematosus (SLE) before
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
PV and Sore legs
At the moment lm on no meds except warfrin and indepamide. My consultant stopped Peg Interferon l must say it was a releif. Side effects are still a problem in particular restless legs. Soreness through the day and in particular at night so lm not getting to much sleep. My Gp prescribed nitrazepam and
At the moment lm on no meds except warfrin and indepamide. My consultant stopped Peg Interferon l must say it was a releif. Side effects are still a problem in particular restless legs. Soreness through the day and in particular at night so lm not getting to much sleep. My Gp prescribed nitrazepam and
Hidden
in
MPN Voice
1 year ago
Does High symptom burden mean aggresive cancer?
Dear fellow warriors.I have posted here before, I'm following up because i got some help to meet a possible mpn specialist thanks to admin here. You've all been incredibly kind, honest and resourceful to me. Thank you all very much I just have this small doubt to people who lived with this for decades
Dear fellow warriors.I have posted here before, I'm following up because i got some help to meet a possible mpn specialist thanks to admin here. You've all been incredibly kind, honest and resourceful to me. Thank you all very much I just have this small doubt to people who lived with this for decades
Xuzy
in
MPN Voice
1 year ago
Hi, does anyone use inteferon and turmeric? Is it good or is it counterproductive? Thanks
Interferón anda tumeric
Interferón anda tumeric
Mercedeshm
in
MPN Voice
1 year ago
ET JAK2 Positive
Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent headaches which were treated for migraines , unexplained fatigue rendered me incapable of functioning. Among other symptoms. I am 36 years and a young mother . I have been on Aspirin and because my symptoms are not improving
Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent headaches which were treated for migraines , unexplained fatigue rendered me incapable of functioning. Among other symptoms. I am 36 years and a young mother . I have been on Aspirin and because my symptoms are not improving
Afya23
in
MPN Voice
1 year ago
Progression to MF
Hi All, I had a BMB in early January and the results show level 1 Post ET MF . The results of the genetic tests have apparently “failed “ but it is my understanding that they need these to correctly diagnose my MF? I have been on peg interferon for the past 4 weeks (45mg) running alongside my HU
Hi All, I had a BMB in early January and the results show level 1 Post ET MF . The results of the genetic tests have apparently “failed “ but it is my understanding that they need these to correctly diagnose my MF? I have been on peg interferon for the past 4 weeks (45mg) running alongside my HU
UKZA
in
MPN Voice
1 year ago
increased Peg interferon
Hi all, So I have had my routine hospital appointment this morning. I am on Peg interferon. I started on it at 65ml in August last year, my platelets have not come down at all, therefore in January we agreed for me to increase to 90ml to see how I go. Again nothing changed at all so Doc has said to
Hi all, So I have had my routine hospital appointment this morning. I am on Peg interferon. I started on it at 65ml in August last year, my platelets have not come down at all, therefore in January we agreed for me to increase to 90ml to see how I go. Again nothing changed at all so Doc has said to
Grendall
in
MPN Voice
1 year ago
Update on Pegylated interferon and parastheasia
Hi I wondered if anyone out there who is experiencing the finger and feet numbness using Pegylated interferon treatment ,has a noticeable reduction with these symptoms after reducing /stopping the treatment? I have been taking Peg( 45 mcg fortnightly) since October ‘21 H/C now .41 WBC creeping down
Hi I wondered if anyone out there who is experiencing the finger and feet numbness using Pegylated interferon treatment ,has a noticeable reduction with these symptoms after reducing /stopping the treatment? I have been taking Peg( 45 mcg fortnightly) since October ‘21 H/C now .41 WBC creeping down
Bobadog
in
MPN Voice
1 year ago
Anyone on interferon who has retinoschisis?
Hello I have ET and am getting more and more interested in changing from hydroxycarbemide to interferon Pegasus. I did note that a rare side effect is to cause problems with the retina. Does anyone have retinoschisis or cysts on the retina which so far have not caused any problem and are allowed to take
Hello I have ET and am getting more and more interested in changing from hydroxycarbemide to interferon Pegasus. I did note that a rare side effect is to cause problems with the retina. Does anyone have retinoschisis or cysts on the retina which so far have not caused any problem and are allowed to take
Na56
in
MPN Voice
1 year ago
Very scared for life. Need assistance
Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, records showing high hb since 2016 itself.I made several trips to the hematologist. Initially I've been suggested just jak2v617f and exon 12 mutations and epo level that came 10.5 m/iu I changed the doctor because he wouldn't
Hi. I'm 23 year old male. I've been known to have polycythemia since 2018, records showing high hb since 2016 itself.I made several trips to the hematologist. Initially I've been suggested just jak2v617f and exon 12 mutations and epo level that came 10.5 m/iu I changed the doctor because he wouldn't
Xuzy
in
MPN Voice
1 year ago
Just saw MPN Specialist | ET+CALR
Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the time it came around I had a binder full of questions. My Husband and I spoke with him, his Fellow and Nurse for almost two hours about my disease
Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the time it came around I had a binder full of questions. My Husband and I spoke with him, his Fellow and Nurse for almost two hours about my disease
Zeppelin11
in
MPN Voice
1 year ago
Why is the hct threshold for females 42/43 in USA but 45 in UK. I'm in UK and it troubles me......
I live in UK, have PV, and on interferon which is working well. My doc has always been happy with my count being 45 or under. Why in USA is the hit lower?
I live in UK, have PV, and on interferon which is working well. My doc has always been happy with my count being 45 or under. Why in USA is the hit lower?
Looolooo
in
MPN Voice
1 year ago
Mis-diagnosed infection
Not sure where to begin, but three weeks ago, after my Avonex injection (12 hrs. later) I noticed two leisons on my skin right about where my injections have been. One leison was draining & both areas were pink & painful. I couldn't figure out what it was. Asked my husband to take me to the ER because
Not sure where to begin, but three weeks ago, after my Avonex injection (12 hrs. later) I noticed two leisons on my skin right about where my injections have been. One leison was draining & both areas were pink & painful. I couldn't figure out what it was. Asked my husband to take me to the ER because
Workerbea
in
My MSAA Community
1 year ago
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