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Experiences with
Interferon beta-1b
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Inteferon benefits
While my platelets refused to budge much on Interferon since stopping it the joints in my hands and feet have become painful my hips and lower back ache. My skin is much dryer and nails more brittle. I have a colonoscopy booked next week once done I will restart the dreaded HU. It will be interesting
While my platelets refused to budge much on Interferon since stopping it the joints in my hands and feet have become painful my hips and lower back ache. My skin is much dryer and nails more brittle. I have a colonoscopy booked next week once done I will restart the dreaded HU. It will be interesting
ciye
in
MPN Voice
2 years ago
Side effects of Interferon
i have just had my 5 th weekly Interferon Injection . having weened off Ruxolitinib . I thought by now the side effects of nausea dizziness fatigue and feeling depressed would have improved but they seem to be getting worse each time and not better . I did improve after a few days in the beginning
i have just had my 5 th weekly Interferon Injection . having weened off Ruxolitinib . I thought by now the side effects of nausea dizziness fatigue and feeling depressed would have improved but they seem to be getting worse each time and not better . I did improve after a few days in the beginning
Heather270240
in
MPN Voice
2 years ago
Bmb confirms ET mpl
Results from bmb all good nothing different from original blood work. Platelets currently 650 need to restart HU, sadly organist didn't work for me,I have been off it for 3 weeks and feel much better. Heamatolgist can only prescribe interferon HU Anagrelide not suitable for me. Referral for
Results from bmb all good nothing different from original blood work. Platelets currently 650 need to restart HU, sadly organist didn't work for me,I have been off it for 3 weeks and feel much better. Heamatolgist can only prescribe interferon HU Anagrelide not suitable for me. Referral for
ciye
in
MPN Voice
2 years ago
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Anyone on Interferon for 5 years or more??
I just read a post of a member who has been on Peg for 5 years and has an AB of 1%. Wondering what the experiences of those who have taken interferon for at least 5 years, both good and bad have been. Have you had lowering of AB, CHR, any effect on bone marrow, have you progressed to another mpn
I just read a post of a member who has been on Peg for 5 years and has an AB of 1%. Wondering what the experiences of those who have taken interferon for at least 5 years, both good and bad have been. Have you had lowering of AB, CHR, any effect on bone marrow, have you progressed to another mpn
Meatloaf9
in
MPN Voice
2 years ago
Questions about AEs on Interferons w.r.t. liver enzymes
I have seen erratic liver enzyme levels while attempting to transition from hydroxyurea to Pegasys. I'm not convinced that the Peg is the cause of the issue but my Dr has stopped the Peg and I’m back to 2g of HU with platelets at about 1400 and increasing at a good pace. It is not good. Other than a
I have seen erratic liver enzyme levels while attempting to transition from hydroxyurea to Pegasys. I'm not convinced that the Peg is the cause of the issue but my Dr has stopped the Peg and I’m back to 2g of HU with platelets at about 1400 and increasing at a good pace. It is not good. Other than a
LongETinUS
in
MPN Voice
2 years ago
AE's on interferon
No drastic new info here, but interesting as we experience INF together. A report on MPN Hub has >3 level adverse effects on INF vs HU. A few of note, many of us are seeing these, if not at these severe levels: Severe AEs: -Lymphopenia, (Low Lymphocyte WBCs) HU: 1%, PEG: 4%. -Neutrophenia, HU:
No drastic new info here, but interesting as we experience INF together. A report on MPN Hub has >3 level adverse effects on INF vs HU. A few of note, many of us are seeing these, if not at these severe levels: Severe AEs: -Lymphopenia, (Low Lymphocyte WBCs) HU: 1%, PEG: 4%. -Neutrophenia, HU:
EPguy
in
MPN Voice
2 years ago
Covid
Hi I have caught Covid (in Spain)2days ago I was allowed to skip my pegylated interferon dose for this holiday ( choir tour) as it’s a tiring week. On return (in 4 days) I have to take my ‘increased’ dose of Peg(60mg) Has anyone taken Peg with Covid and does it increase the side effects much? I do feel
Hi I have caught Covid (in Spain)2days ago I was allowed to skip my pegylated interferon dose for this holiday ( choir tour) as it’s a tiring week. On return (in 4 days) I have to take my ‘increased’ dose of Peg(60mg) Has anyone taken Peg with Covid and does it increase the side effects much? I do feel
Bobadog
in
MPN Voice
2 years ago
Peginterferon with Anagrelide?
Hi, does anyone out there have experience of taking peginterferon with Anagrelide for ET? Until about 6 mths ago I was taking a mixture of Hydrea and Anagrelide but it was no longer working so well so I switched to interferon. I’m on the max dose of 180 weekly but platelets are still 650ish and as
Hi, does anyone out there have experience of taking peginterferon with Anagrelide for ET? Until about 6 mths ago I was taking a mixture of Hydrea and Anagrelide but it was no longer working so well so I switched to interferon. I’m on the max dose of 180 weekly but platelets are still 650ish and as
R_Watson
in
MPN Voice
2 years ago
Can anyone recommend a cooler bag for travelling with Interferon in the tropics?
We are off on a family trip to Costa Rica and are going to be spending a fair amount of time on buses. Can anyone recommend a lightweight method to keep my syringes cool? I’m taking 4 x 135mg syringes - only little! I was looking at Frio bags for insulin but they only maintain temperatures between 18
We are off on a family trip to Costa Rica and are going to be spending a fair amount of time on buses. Can anyone recommend a lightweight method to keep my syringes cool? I’m taking 4 x 135mg syringes - only little! I was looking at Frio bags for insulin but they only maintain temperatures between 18
Huginn
in
MPN Voice
2 years ago
Alliance Backs SLE Research by Minority Scientists
The Lupus Research Alliance (LRA) has awarded a total of $2.1 million to five research projects from underrepresented minority scientists focused on the development of tests and treatments for systemic lupus erythematosus (SLE). “We congratulate the inaugural recipients of our Diversity in Lupus Research
The Lupus Research Alliance (LRA) has awarded a total of $2.1 million to five research projects from underrepresented minority scientists focused on the development of tests and treatments for systemic lupus erythematosus (SLE). “We congratulate the inaugural recipients of our Diversity in Lupus Research
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 years ago
Interferon injections
Hi folks, Wanted to know,am about to go on interferon injections as my iron count is 3.4 & ferritin count is 16. I feel fine but wondered how the injections are going for those taking it and what side effects are mostly common. Many thanks 😊
Hi folks, Wanted to know,am about to go on interferon injections as my iron count is 3.4 & ferritin count is 16. I feel fine but wondered how the injections are going for those taking it and what side effects are mostly common. Many thanks 😊
keviekev
in
MPN Voice
2 years ago
Nutritional Therapy to relieve IBS symptoms
NB: Always ask your doctor before embarking on any of the nutritional advice stated below. Hope this helps some1 out there. CAUSES of IBS Problem is muscles in the small & large intestines contract in spasms rather than regularly causing food to move to quickly causing less water to be absorbed which
NB: Always ask your doctor before embarking on any of the nutritional advice stated below. Hope this helps some1 out there. CAUSES of IBS Problem is muscles in the small & large intestines contract in spasms rather than regularly causing food to move to quickly causing less water to be absorbed which
Mwaakas
in
IBS Network
2 years ago
A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.
I have ET jak 2 positive and can no longer tolerate hydroxyurea. I had a phone consultation with my hematologist yesterday and asked him about switching from hydroxyurea to interferon. I really appreciated peoples replies about their experiences switching from hydroxyurea to interferon. My hematologist
I have ET jak 2 positive and can no longer tolerate hydroxyurea. I had a phone consultation with my hematologist yesterday and asked him about switching from hydroxyurea to interferon. I really appreciated peoples replies about their experiences switching from hydroxyurea to interferon. My hematologist
Island-Lady
in
MPN Voice
2 years ago
Effective INF Dose Part 2, more considerations, research, and Dr vs patient wishes
My last two doses of Bes were 70-80 mcg. In my recent Hem visit Dr was most displeased that I had cut it from 100 (actually 110) prior to that without his approval. He had seemed looser on dose when we discussed before. The 1st lowered dose was in hope I might feel ok during my one week driving trip
My last two doses of Bes were 70-80 mcg. In my recent Hem visit Dr was most displeased that I had cut it from 100 (actually 110) prior to that without his approval. He had seemed looser on dose when we discussed before. The 1st lowered dose was in hope I might feel ok during my one week driving trip
EPguy
in
MPN Voice
2 years ago
Questions about switching from hydroxyurea to interferon
I am ET Jak 2 positive, age 71. I have been taking a low-dose, 500 mg of hydroxyurea every three days, for the last year and prior to that I took the same dose every other day. I reduced the dosage even though my platelets have not gone below 600, because I was just too tired with the higher dose.
I am ET Jak 2 positive, age 71. I have been taking a low-dose, 500 mg of hydroxyurea every three days, for the last year and prior to that I took the same dose every other day. I reduced the dosage even though my platelets have not gone below 600, because I was just too tired with the higher dose.
Island-Lady
in
MPN Voice
2 years ago
Interferon effects on Calr alleleborden
I have seen some people write that this drug does not have much effect on calr AB,it can control the platelets count, but it May have no effects on AB percentage So is there any chance for calr ET patients to have remission with this drug?and is it necessary to have max dose of it to achieve mullecular
I have seen some people write that this drug does not have much effect on calr AB,it can control the platelets count, but it May have no effects on AB percentage So is there any chance for calr ET patients to have remission with this drug?and is it necessary to have max dose of it to achieve mullecular
Violetaaa
in
MPN Voice
2 years ago
Peg jab
Thanks to everyone who offered tips on self-jabbing. It was a breeze although the only slight problem encountered was wrenching the caps off the needle and the interferon containers. They were screwed on very tightly.
Thanks to everyone who offered tips on self-jabbing. It was a breeze although the only slight problem encountered was wrenching the caps off the needle and the interferon containers. They were screwed on very tightly.
gilded
in
MPN Voice
2 years ago
Some Interesting Information - Parkin-mediated Mitophagy
While the clinical trial in the article does not target PD, some interesting facts that may be related to PD. (Inflammation). Will leave to you guys to infer, especially something related Parkin-mediated Mitophagy and how it is affected in PD patients https://www.cell.com/cell-reports-medicine/fulltext
While the clinical trial in the article does not target PD, some interesting facts that may be related to PD. (Inflammation). Will leave to you guys to infer, especially something related Parkin-mediated Mitophagy and how it is affected in PD patients https://www.cell.com/cell-reports-medicine/fulltext
John_morris71
in
Cure Parkinson's
2 years ago
Tiny platelet drop.
Platelet drop was a meagre 40, it may be time to admit after a year interferon is not helping me. Speaking to Dr today she dismissed Night sweats as an ET symptom other mpns yes. Plenty on here would disagree. Got bmb on 1st June once those results back we can get on with referral for Prof Harrison
Platelet drop was a meagre 40, it may be time to admit after a year interferon is not helping me. Speaking to Dr today she dismissed Night sweats as an ET symptom other mpns yes. Plenty on here would disagree. Got bmb on 1st June once those results back we can get on with referral for Prof Harrison
ciye
in
MPN Voice
2 years ago
Phone Appointment with professor Harrison
I had appointment today. Was organised , sending her photo of my arm , blood test results and some thoughts I wanted to discuss. Waited from 11 till 12.45. Rang her secretary who is very helpful. He said she would ring soon but then got back saying 2pm ... Professor Harrison was lovely. Said
I had appointment today. Was organised , sending her photo of my arm , blood test results and some thoughts I wanted to discuss. Waited from 11 till 12.45. Rang her secretary who is very helpful. He said she would ring soon but then got back saying 2pm ... Professor Harrison was lovely. Said
Mostew
in
MPN Voice
2 years ago
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