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Interferon beta-1b
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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
3 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
3 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
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4 months ago
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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
3 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
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
4 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
4 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
4 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
4 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
4 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
4 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
4 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
4 months ago
Best treatment for Post PV/MF ?
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
MCW22
in
MPN Voice
4 months ago
Allele Burden
Quick update My interferon is currently 135 per week, its been extended from 7 to 10 days, numbers are all ok HCT 0.455, not concerned. My Allele Burden results Jan 2021 2.04% March 2023 1.62% Slightly elevated LFT ALT 54 down from 60 down from 66 GGT 64 down from 94 eGFR 89 Ferritin 34
Quick update My interferon is currently 135 per week, its been extended from 7 to 10 days, numbers are all ok HCT 0.455, not concerned. My Allele Burden results Jan 2021 2.04% March 2023 1.62% Slightly elevated LFT ALT 54 down from 60 down from 66 GGT 64 down from 94 eGFR 89 Ferritin 34
shiftzz
in
MPN Voice
5 months ago
Splenomegaly and Interferon
Hi! Did anyone who has been treated with Interferon for PV or MF and got their allele burden down see any reduction in splenomegaly? And if so, to what extent?
Hi! Did anyone who has been treated with Interferon for PV or MF and got their allele burden down see any reduction in splenomegaly? And if so, to what extent?
Dovakin
in
MPN Voice
5 months ago
Interferon reaction
Hi all,I've recently joined the group and already have found it a great source of information & reassuring messages. I started interferon back in August and it's going okay. I am having a reaction at the injection site. My skin is rash looking, bright red and dry. Is there anything that works? The nurses
Hi all,I've recently joined the group and already have found it a great source of information & reassuring messages. I started interferon back in August and it's going okay. I am having a reaction at the injection site. My skin is rash looking, bright red and dry. Is there anything that works? The nurses
RuaSaoirse
in
MPN Voice
5 months ago
starting hydroxy as pathway to Rux
hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and venesection. My platelets and white blood cells started shifting so my haem consultant put me on interferon which controlled my blood beautifully. it took me a couple of months of flu symptoms and settled
hello I’m 58 and diagnosed with PV 8 years ago which was managed up to October 22 with aspirin and venesection. My platelets and white blood cells started shifting so my haem consultant put me on interferon which controlled my blood beautifully. it took me a couple of months of flu symptoms and settled
Sanga
in
MPN Voice
5 months ago
Cataract surgery?
Has anyone had any cataract surgery while taking Pegasys? Is there a problem with eye surgery while taking Interferon? I'm about to be changed over to Pegasys from Hydrea, and also about to have cataract surgery. Some of the things I've read seem to indicate that may be a problem.
Has anyone had any cataract surgery while taking Pegasys? Is there a problem with eye surgery while taking Interferon? I'm about to be changed over to Pegasys from Hydrea, and also about to have cataract surgery. Some of the things I've read seem to indicate that may be a problem.
dogsandhorses
in
MPN Voice
5 months ago
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