Search
Search
About
Log in
Join
Experiences with
Interferon beta-1a
Posts
Communities
1,058 public posts
Filter results
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
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
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 ?
Hidden
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
Hidden
in
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
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
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
1
...
9
10
11
...
53
Next page
10
20
30
40
50
Filter results
Clear filters
Posted in
All communities
MPN Voice
751 results
My MSAA Community
39 results
British Liver Trust
28 results
View top 10 communities
Sort by
Most Relevant
Newest