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Interferon alfa-2a
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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
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LUpus Patients Understanding and Support
2 years ago
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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
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
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
Peg injections - two in one day
Hi all, I’m on peginterferon Alfa-2a for ET and a few weeks ago my dose was increased to 180mg. The hospital pharmacy deliver my medication and I can only assume they’ve ran out of 180mg syringes as I’ve been sent about 8 boxes of 90mg pre filled syringes meaning I’m expected to do 2 injections after
Hi all, I’m on peginterferon Alfa-2a for ET and a few weeks ago my dose was increased to 180mg. The hospital pharmacy deliver my medication and I can only assume they’ve ran out of 180mg syringes as I’ve been sent about 8 boxes of 90mg pre filled syringes meaning I’m expected to do 2 injections after
FashionLover
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
Discovery of a signaling feedback circuit that defines interferon responses in MPN
« Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs), but the mechanisms of action are unclear and it remains unknown why some patients
« Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs), but the mechanisms of action are unclear and it remains unknown why some patients
Manouche
in
MPN Voice
2 years ago
Can Pv and peg interferon cause issues with your immune system
Morning Wondered if anyone else has had issues with immune system since being diagnosed with an Mpn and being treated with peg interferon I started on 45mcg of peg in Jan 2021 thus was increased to 90mcg in May 2021 In June I had a positive Ena profile and was diagnosed with Sjogrens syndrome - not
Morning Wondered if anyone else has had issues with immune system since being diagnosed with an Mpn and being treated with peg interferon I started on 45mcg of peg in Jan 2021 thus was increased to 90mcg in May 2021 In June I had a positive Ena profile and was diagnosed with Sjogrens syndrome - not
Dottiedot
in
MPN Voice
2 years ago
Liver Issues on Inf (Peg) (apologies for long post)
So spoke with my MPN specialist last night about my recent CBC results. The good news is that the 90mcg of Peg (bi-weekly) appears to be doing a good job keeping my blood chemistry in check. Platelets continue their slow downward trend (most recent reading at 574 coming most recently from 725, 643, 595
So spoke with my MPN specialist last night about my recent CBC results. The good news is that the 90mcg of Peg (bi-weekly) appears to be doing a good job keeping my blood chemistry in check. Platelets continue their slow downward trend (most recent reading at 574 coming most recently from 725, 643, 595
Solyesh
in
MPN Voice
2 years ago
Interferon alpha
I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a lot or venesections and it is now 0.5 .my target is 0.45. It has been suggested that I start on interferon alpha. Does anyone have experience
I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a lot or venesections and it is now 0.5 .my target is 0.45. It has been suggested that I start on interferon alpha. Does anyone have experience
Paul1214
in
MPN Voice
2 years ago
A bit of drama on Besremi
(there's a sort of survey question near the end) I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110. -That evening I had high sensitivity to light, looking at the overhead kitchen light was nearly like looking at the sun. Even the white sink
(there's a sort of survey question near the end) I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110. -That evening I had high sensitivity to light, looking at the overhead kitchen light was nearly like looking at the sun. Even the white sink
EPguy
in
MPN Voice
2 years ago
Lower dose versus lower frequency of Peg Interferon
On the Facebook MPN Interferon forum today, a member posted that he had been on Peg Interferon 45 every two weeks for two years but was having some problems, so was considering taking a break from it. I replied that, if the Peg was actually working for him, then maybe he should consider a lower dose,
On the Facebook MPN Interferon forum today, a member posted that he had been on Peg Interferon 45 every two weeks for two years but was having some problems, so was considering taking a break from it. I replied that, if the Peg was actually working for him, then maybe he should consider a lower dose,
DottyDaisy
in
MPN Voice
2 years ago
Meralgia paraesthetica?
Hi my GP thinks I have this and I am waiting results of an MRI. Does anyone else on interferon also suffer with this? Mine only comes on when I’m out walking and I didn’t have it before I started on interferon. My right leg goes numb in the upper thigh area and I lose sensation. I would be interested
Hi my GP thinks I have this and I am waiting results of an MRI. Does anyone else on interferon also suffer with this? Mine only comes on when I’m out walking and I didn’t have it before I started on interferon. My right leg goes numb in the upper thigh area and I lose sensation. I would be interested
Jonnymitts
in
MPN Voice
2 years ago
Change of clinic
I had a telephone appointment with my haematologist on Monday but instead it was with a nurse led clinic. I have apparently been handed over to this clinic. I was not told this was happening nor was it discussed at my last haematology appointment. Has this happened to anyone else? It has quite upset
I had a telephone appointment with my haematologist on Monday but instead it was with a nurse led clinic. I have apparently been handed over to this clinic. I was not told this was happening nor was it discussed at my last haematology appointment. Has this happened to anyone else? It has quite upset
Balser
in
MPN Voice
2 years ago
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