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Interferon beta-1b
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Help! anagrelide
Hi mpners,A bit of help needed, a balanced opinion on anagrelide please. I've an appointment tomorrow to decide on next treatment and there's lots of info on interferon but not for anagrelide. I've got AT jak2 plus seronegative arthritis and spinal nerve damage,so I take another cytoxic drug which reduces
Hi mpners,A bit of help needed, a balanced opinion on anagrelide please. I've an appointment tomorrow to decide on next treatment and there's lots of info on interferon but not for anagrelide. I've got AT jak2 plus seronegative arthritis and spinal nerve damage,so I take another cytoxic drug which reduces
Spanelmad
in
MPN Voice
7 months ago
Good News: Pegasys finally working! Bad News: Pulmonary embolus!
First the good news: After 7 months of gradually increasing dosages, the Pegasys finally kicked in, as members of this forum told me it would. For months, both my platelets and Hct slowly rose, and it wasn’t until I got to 180mcg/week that the numbers started coming down. I’ve been on the max dose
First the good news: After 7 months of gradually increasing dosages, the Pegasys finally kicked in, as members of this forum told me it would. For months, both my platelets and Hct slowly rose, and it wasn’t until I got to 180mcg/week that the numbers started coming down. I’ve been on the max dose
Minify
in
MPN Voice
7 months ago
PV treatment follow-Up
I previous wrote to the community a few months ago. I explained that I am 57 year old male in excellent condition taking no medications except for 81 mg aspirin daily and going for phlebotomy every 3 to 4 months for PV JAK2 Axon 12. I am asymptomatic and feel great. Had genetic blood work almost 3
I previous wrote to the community a few months ago. I explained that I am 57 year old male in excellent condition taking no medications except for 81 mg aspirin daily and going for phlebotomy every 3 to 4 months for PV JAK2 Axon 12. I am asymptomatic and feel great. Had genetic blood work almost 3
FlTodd
in
MPN Voice
7 months ago
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Besremi and the heart
I restarted a moderate and steady 100mcg dose of Besremi this fall, after being off it all summer. (Most recent test showed my platelets continuing down but HCT and liver enzymes a bit up.) The day after my last shot I had a strange episode while cooking dinner. For 5 or 10 minutes I felt a pounding,
I restarted a moderate and steady 100mcg dose of Besremi this fall, after being off it all summer. (Most recent test showed my platelets continuing down but HCT and liver enzymes a bit up.) The day after my last shot I had a strange episode while cooking dinner. For 5 or 10 minutes I felt a pounding,
Ovidess
in
MPN Voice
7 months ago
painkillers for toothache
I have ET and am on Pegasys Interferon. Hello My question is, I have very bad toothache and can’t see a dentist for a couple of weeks ! I want to take a painkiller stronger than paracetamol? Has anyone been in a similar situation and was able to take something stronger ? Thank you for reading this
I have ET and am on Pegasys Interferon. Hello My question is, I have very bad toothache and can’t see a dentist for a couple of weeks ! I want to take a painkiller stronger than paracetamol? Has anyone been in a similar situation and was able to take something stronger ? Thank you for reading this
Abrams
in
MPN Voice
7 months ago
Immune Responses + Autoimmune Myelofibrosis
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
LongETinUS
in
MPN Voice
8 months ago
AST, ALT high
Hi, while been on Interferon journey my AST and ALT rocketed up high to 64 for ast and 92 for alt.Is this change a concern ? How can I maintain liver enzymes ? I am on a low carb high fat diet but I am using all the healthy ingredients. Not sure if related. Haematologist doesn't seem worry about that
Hi, while been on Interferon journey my AST and ALT rocketed up high to 64 for ast and 92 for alt.Is this change a concern ? How can I maintain liver enzymes ? I am on a low carb high fat diet but I am using all the healthy ingredients. Not sure if related. Haematologist doesn't seem worry about that
kamiilos
in
MPN Voice
8 months ago
Hu days update
Had my Heam update after my acne like itchy rash.Confirmed allergic reaction, off Hu for good.She then said they would try me on blood thinner only! Well surprised as I've had bilateral pulmonary embolism last year big redflag. Heam is another locom so I politely asked how many Et MPN patients they
Had my Heam update after my acne like itchy rash.Confirmed allergic reaction, off Hu for good.She then said they would try me on blood thinner only! Well surprised as I've had bilateral pulmonary embolism last year big redflag. Heam is another locom so I politely asked how many Et MPN patients they
Spanelmad
in
MPN Voice
8 months ago
Bloods unstable
Hi everyone I was diagnosed with P/V in December 2022 Jak 2 positive . Since my diagnosis my bloods have only been stable for a few weeks and at my last review I was told my haemoglobin 169 and haemltocrit had crept back up to 0.527 I was told they didn't want to send me for a venesection because
Hi everyone I was diagnosed with P/V in December 2022 Jak 2 positive . Since my diagnosis my bloods have only been stable for a few weeks and at my last review I was told my haemoglobin 169 and haemltocrit had crept back up to 0.527 I was told they didn't want to send me for a venesection because
Blonde25
in
MPN Voice
8 months ago
Bloods
Some input needed please I am on hydroxycarbamide all was well now my hematocric is dropping and my platelets have risen to 457 in 6 weeks I am now just to take 2 x 500 pills a week till next bloodtest for iron etc then may have to change medication I am worried about anagrelide but was told interferon
Some input needed please I am on hydroxycarbamide all was well now my hematocric is dropping and my platelets have risen to 457 in 6 weeks I am now just to take 2 x 500 pills a week till next bloodtest for iron etc then may have to change medication I am worried about anagrelide but was told interferon
ChillyAsh34
in
MPN Voice
8 months ago
itching skin after showering
Hello! I have PV and am recently experiencing awful itching skin only after showering. I’ve reduced my showers to every second day and started taking an antihistamine 30 mins before which worked initially but not this morning 🫣they are 10mg tablets I wonder do I need to take a bigger dose? Does anyone
Hello! I have PV and am recently experiencing awful itching skin only after showering. I’ve reduced my showers to every second day and started taking an antihistamine 30 mins before which worked initially but not this morning 🫣they are 10mg tablets I wonder do I need to take a bigger dose? Does anyone
Deevie1
in
MPN Voice
8 months ago
Rare Interferon relation to an autoimmune condition
-[i]This post applies to just the rarest of circumstances and does not implicate the well established safety of IFN as we use it[/i]. - I've been checking out trials etc for Sjogren's for obvious reasons. I came across this one which has a clearly presented note on the IFN-autoimmune connection I've
-[i]This post applies to just the rarest of circumstances and does not implicate the well established safety of IFN as we use it[/i]. - I've been checking out trials etc for Sjogren's for obvious reasons. I came across this one which has a clearly presented note on the IFN-autoimmune connection I've
EPguy
in
MPN Voice
8 months ago
Advice appreciated.
As readers on this Forum may know, I’m 80 and was diagnosed withCALR + ET 18 months ago. I’m on 75mg aspirin daily and 90mcg Peg interferon fortnightly. Currently doing well and cheerful and in the best of health, with a dog that keeps me on the go, and still taking adventurous holidays. (I can
As readers on this Forum may know, I’m 80 and was diagnosed withCALR + ET 18 months ago. I’m on 75mg aspirin daily and 90mcg Peg interferon fortnightly. Currently doing well and cheerful and in the best of health, with a dog that keeps me on the go, and still taking adventurous holidays. (I can
gilded
in
MPN Voice
8 months ago
Coincidence?
I was doing very well on peg interferon, which I started in July. I felt loads better than I had for a long time, with negligible side effect. However, the last few weeks I have been really tired and getting breathless after the slightest movement. I had my blood results on Tuesday, my haemoglobin had
I was doing very well on peg interferon, which I started in July. I felt loads better than I had for a long time, with negligible side effect. However, the last few weeks I have been really tired and getting breathless after the slightest movement. I had my blood results on Tuesday, my haemoglobin had
lizzziep
in
MPN Voice
8 months ago
Interferon and Hypothyroidism
I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My consultant now says they need to be under control and as I have declined increasing the HU has mentioned interferon. I have said I will think about it
I have ET and have been taking HU 500mcg daily for nearly 4 years. My platelets reduced from about 1200 to hover around 700-800 at each blood test. My consultant now says they need to be under control and as I have declined increasing the HU has mentioned interferon. I have said I will think about it
jodary
in
MPN Voice
8 months ago
Big Question
I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year). I have never had an official allele burden as it is not available here. Though I did send saliva and nail clippings to the study in California on familial MPNs under Dr. Angela Fleischman. She could
I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year). I have never had an official allele burden as it is not available here. Though I did send saliva and nail clippings to the study in California on familial MPNs under Dr. Angela Fleischman. She could
Planti
in
MPN Voice
8 months ago
Osteoporosis and PV
Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI showed sacral fractures ,which had caused quite severe back pain for sometime. I am about to start taking Ruxolitinib for my PV.(Unfortunately Peg interferon caused paraesthesia + after taking it for 18months,so I stopped
Hi , I was recently diagnosed with osteoporosis with a Dexa scan,after the MRI showed sacral fractures ,which had caused quite severe back pain for sometime. I am about to start taking Ruxolitinib for my PV.(Unfortunately Peg interferon caused paraesthesia + after taking it for 18months,so I stopped
Bobadog
in
MPN Voice
8 months ago
Interferon effects
Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly. Before Pegasys my platelets were close to 600 and HCT around 0.55 Today my platelets dropped to 297 and HCT to 0.47 in just 5 or 6 weeks. Should I be happy or concern for fast adjustment ? I thought interferon achieves
Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly. Before Pegasys my platelets were close to 600 and HCT around 0.55 Today my platelets dropped to 297 and HCT to 0.47 in just 5 or 6 weeks. Should I be happy or concern for fast adjustment ? I thought interferon achieves
kamiilos
in
MPN Voice
9 months ago
Starting Interferon - advice please
Hi everyone.. I would really appreciate some advice and benefit of your experiences. I am just about to start on interferon, lowest dose fortnightly 45mcg. I am interested in knowing what people's experience with side effects has been and how quickly these might have settled down. Also how quickly
Hi everyone.. I would really appreciate some advice and benefit of your experiences. I am just about to start on interferon, lowest dose fortnightly 45mcg. I am interested in knowing what people's experience with side effects has been and how quickly these might have settled down. Also how quickly
Mrs_Average
in
MPN Voice
9 months ago
Outcome after 4 years of weekly Pegasys injections for PV.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Hello everyone, This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms.
Manouche
in
MPN Voice
9 months ago
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