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Interferon beta-1a
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Treatment Change, question
Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to Pegasys. I'm currently on both whilst still taking the hydroxycarbamide I am introducing the interferon at 45mg every 2 weeks, for 8 weeks, I'm
Hi Everyone, I'm enjoying all of the posts and replies they are really informative. I'm in the process in changing my medication from hydroxycarbamide to Pegasys. I'm currently on both whilst still taking the hydroxycarbamide I am introducing the interferon at 45mg every 2 weeks, for 8 weeks, I'm
Swim360
in
MPN Voice
3 months ago
Still undecided about Inteferon
As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in the late 700s to 800s . My haematologist says we need to get them under control and as I have declined an increase in HU is keen to get me to
As my clinic appointment approaches I am getting more and more undecided about Interferon. I am currently on 500mg Hydroxycarbomide daily and platelets stay in the late 700s to 800s . My haematologist says we need to get them under control and as I have declined an increase in HU is keen to get me to
jodary
in
MPN Voice
4 months ago
Anagrelide success 😃
hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections for 12 months at the highest dose with minimal platelet reduction (1400 - 1180), my count has been over 1000 for 2 years. I have successfully
hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections for 12 months at the highest dose with minimal platelet reduction (1400 - 1180), my count has been over 1000 for 2 years. I have successfully
Maxamber
in
MPN Voice
4 months ago
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Travelling with interferon/pegasys
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Sunnyhunny
in
MPN Voice
4 months ago
3 Oct 2023 Sleep issue solved so far I think
G'day ms friends and family. Everybody great so far today? I am, I slept all night, did not wake to urinate, slept alll night and woke up at the usual time. I had a win, the medicine is called zolpidem .5mg. I am sure there are side effects but I just want to sleep so Iwill find out about it
G'day ms friends and family. Everybody great so far today? I am, I slept all night, did not wake to urinate, slept alll night and woke up at the usual time. I had a win, the medicine is called zolpidem .5mg. I am sure there are side effects but I just want to sleep so Iwill find out about it
RoyceNewton
in
My MSAA Community
10 months ago
Interferon and the liver
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
dbus1417
in
MPN Voice
4 months ago
PV fatigue
My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed treatments of phlebotomies and Hydroxyurea. My fatigue since diagnosis and treatments starting 2021 is all consuming. I don’t know how to deal or cope
My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed treatments of phlebotomies and Hydroxyurea. My fatigue since diagnosis and treatments starting 2021 is all consuming. I don’t know how to deal or cope
CherokeeBlue
in
MPN Voice
4 months ago
Pain in heels.. Interferon related or not?
Hi, just wondering if anyone has had painful heels especially when walking while being on Interferon? I’ve been on interferon for around 9 months and every so often I struggle to walk due to the pain, it does ease off and it happens randomly. I didn’t have this before taking interferon. I have heard
Hi, just wondering if anyone has had painful heels especially when walking while being on Interferon? I’ve been on interferon for around 9 months and every so often I struggle to walk due to the pain, it does ease off and it happens randomly. I didn’t have this before taking interferon. I have heard
beckyluck
in
MPN Voice
4 months ago
AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
4 months ago
Peg and rash
Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing Amouris fugax (TIA). So then clopidogrel. Fatigue has always been my worst symptom. I changed to peg interferon in Oct 23 dose 45mg every fortnight. I have very dry skin and a rash on my arms,legs, chest and we're iv scratched
Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing Amouris fugax (TIA). So then clopidogrel. Fatigue has always been my worst symptom. I changed to peg interferon in Oct 23 dose 45mg every fortnight. I have very dry skin and a rash on my arms,legs, chest and we're iv scratched
gbeam
in
MPN Voice
4 months ago
People with high blood levels of niacin, (vitamin B3), may be more likely to have a heart attack or stroke than those with lower levels
[i]I have a confession to make: I take vitamin supplements. Why is this a confession? Well, because research has indicated for years that dietary supplements are a waste of money for most people. https://www.newscientist.com/article/2325423-vitamins-and-dietary-supplements-are-a-waste-of-money-for-most-people
[i]I have a confession to make: I take vitamin supplements. Why is this a confession? Well, because research has indicated for years that dietary supplements are a waste of money for most people. https://www.newscientist.com/article/2325423-vitamins-and-dietary-supplements-are-a-waste-of-money-for-most-people
AussieNeil
Partner
in
CLL Support
5 months ago
Interferon alpha
I got diagnosed with ET Jak2 positive back in November and 42 years old. I've had my latest blood results back and my platlets are just under 600. Having read a number of posts, this seems quite low compared to others. My doctor has suggested putting me on Interferon Alpha and sent me the leaflet guide
I got diagnosed with ET Jak2 positive back in November and 42 years old. I've had my latest blood results back and my platlets are just under 600. Having read a number of posts, this seems quite low compared to others. My doctor has suggested putting me on Interferon Alpha and sent me the leaflet guide
Carlalawoo
in
MPN Voice
4 months ago
Approved or Trials of RBC lowering drugs?
Does anyone know of any FDA approved drugs that are more effective at lowering RBC's? I have been losing the battle using interferon. I'm currently taking about 145mcg's of Pegasys and my neutrophils just dipped to .87 while my HCT is still in excess of 45. I've been at this dose for several months.
Does anyone know of any FDA approved drugs that are more effective at lowering RBC's? I have been losing the battle using interferon. I'm currently taking about 145mcg's of Pegasys and my neutrophils just dipped to .87 while my HCT is still in excess of 45. I've been at this dose for several months.
jon1972
in
MPN Voice
5 months ago
Post ET MF - Advice Please
Hello, I am new here - really wish I had found you sooner. My Dad is usually a very active 77 year old. He found out he had ET aged 46 and was initially treated with aspirin. He then started taking Hydroxycarbamide, but he didn't tolerate it well so was switched to Anegrelide, which suited him well
Hello, I am new here - really wish I had found you sooner. My Dad is usually a very active 77 year old. He found out he had ET aged 46 and was initially treated with aspirin. He then started taking Hydroxycarbamide, but he didn't tolerate it well so was switched to Anegrelide, which suited him well
moongazer100
in
MPN Voice
5 months ago
ET CALR
hello there, I was diagnosed with ET positive CALR mutation on october2023, On August 2023, suddenly my right eye was totally blind for 30 minutes went to the ER immediately and my CBC showed a high platelets caused clot in my eye, the hospital admitted me and started brain and abdomen CT scan
hello there, I was diagnosed with ET positive CALR mutation on october2023, On August 2023, suddenly my right eye was totally blind for 30 minutes went to the ER immediately and my CBC showed a high platelets caused clot in my eye, the hospital admitted me and started brain and abdomen CT scan
Neghdar73
in
MPN Voice
5 months ago
New to MS group
To be honest I am unsure what to say. I was diagnosed with polycythemia Vera in 2020 which is a rare blood cancer. Not common in young people and not common in women, yeah me! No cure only manageable. After getting my Covid booster in November 21 my blood counts never stabilized. So, I was faced
To be honest I am unsure what to say. I was diagnosed with polycythemia Vera in 2020 which is a rare blood cancer. Not common in young people and not common in women, yeah me! No cure only manageable. After getting my Covid booster in November 21 my blood counts never stabilized. So, I was faced
KLCTJC
in
My MSAA Community
5 months ago
Peg Interferon Journey
Just to encourage those starting on Peg Interferon to be patient & to be your own advocate on your treatment. I started on Peg 2 years ago after asking for it due to my intolerance of HU after my ET Jak2 diagnosis following a shoulder sports injury. I had no symptoms apart from slightly breathless
Just to encourage those starting on Peg Interferon to be patient & to be your own advocate on your treatment. I started on Peg 2 years ago after asking for it due to my intolerance of HU after my ET Jak2 diagnosis following a shoulder sports injury. I had no symptoms apart from slightly breathless
Exeter21
in
MPN Voice
5 months ago
Scientists devise novel strategy to seek and destroy leukemia stem cells
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
PhysAssist
in
MPN Voice
5 months ago
Hydroxyurea Side Effects
66 year old male diagnosed with PV last fall (October) put on Hydroxyurea oral, 500 mg/day. I have Hashimoto's thryoiditis (auto-immune condition causing low thyroid). As such, gastro-intestinal tract is a major player - no gluten, no night-shades (tomatoes, potatoes, all peppers), inflammation
66 year old male diagnosed with PV last fall (October) put on Hydroxyurea oral, 500 mg/day. I have Hashimoto's thryoiditis (auto-immune condition causing low thyroid). As such, gastro-intestinal tract is a major player - no gluten, no night-shades (tomatoes, potatoes, all peppers), inflammation
hsdale3
in
MPN Voice
5 months ago
Pegasys - Medicare Payment Options and Dosing Schedule
Hi Everyone, I live in Connecticut in the US , have PV (exxon 12 mutation) and have been on pegasys for about 3 years. I now am on an every other week dose of 45 mcg. I am in a Medicare Advantage program. I was supported by a PAN copay program which has apparently run out and am confronted with
Hi Everyone, I live in Connecticut in the US , have PV (exxon 12 mutation) and have been on pegasys for about 3 years. I now am on an every other week dose of 45 mcg. I am in a Medicare Advantage program. I was supported by a PAN copay program which has apparently run out and am confronted with
gvibes
in
MPN Voice
5 months ago
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