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Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
merlisa
in
MPN Voice
3 years ago
Monday Dessert: Pandan Jelly in Coconut Milk. š±šā¤ļøšŗ
Hello everyone, hope you have a great start of the week! š¤ Yesterday I visited my parents and they gave me some pandan leaves from their friendās garden, so I just made pandan jelly dessert. It is served hot or cold. šš Recipe: Boil pandan leaves in water and add vegan agar powder to make jelly.
Hello everyone, hope you have a great start of the week! š¤ Yesterday I visited my parents and they gave me some pandan leaves from their friendās garden, so I just made pandan jelly dessert. It is served hot or cold. šš Recipe: Boil pandan leaves in water and add vegan agar powder to make jelly.
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Vegan Foods for Life
3 years ago
Switched from Hydroxyurea to Pegylated Interferon (PEGASYS)
Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI. I have polycythemia vera with JAK2 variant. I was diagnosed sometime ago. Maybe 7 years. Have had various treatments including venesection, interferon alpha
Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI. I have polycythemia vera with JAK2 variant. I was diagnosed sometime ago. Maybe 7 years. Have had various treatments including venesection, interferon alpha
SuzanneMPD
in
MPN Voice
3 years ago
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MPN Awareness Day, September 9, 2021 - A special story
(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our community, I want to re-share (Sept. 2019) a very inspiring story from Leona, who subscribed to the PV Reporter newsletter back in 2013 and remains
(One day early :) Today is MPN Awareness Day. A time to spread awareness. Hope, inspiration and passion in living are just a few of our allies. In honor of our community, I want to re-share (Sept. 2019) a very inspiring story from Leona, who subscribed to the PV Reporter newsletter back in 2013 and remains
PVReporter
in
MPN Voice
3 years ago
Lupus Research Alliance Applauds U.S. FDA Approval of AstraZenecaās anifrolumab-fnia (Saphneloā¢) for Systemic Lupus Erythematosus (SLE)
Lupus Therapies Continue to Evolve What will be the focus of treatments to come? It can be a difficult disease to diagnose and a difficult disease to treat. Itās called lupus, and as many as 24,000 people in the United States are diagnosed with the disease each year. Scientists today are working on
Lupus Therapies Continue to Evolve What will be the focus of treatments to come? It can be a difficult disease to diagnose and a difficult disease to treat. Itās called lupus, and as many as 24,000 people in the United States are diagnosed with the disease each year. Scientists today are working on
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
3 years ago
Interferon auto antibodies
Does anyone on here know anything about interferon antibodies? I read a study recently regarding people with these antibodies and covid.. has anyone been tested for them or told they have them ? Is anyone about to see a rheumatologist who could ask about them ?
Does anyone on here know anything about interferon antibodies? I read a study recently regarding people with these antibodies and covid.. has anyone been tested for them or told they have them ? Is anyone about to see a rheumatologist who could ask about them ?
Fluffypip
in
LUPUS UK
3 years ago
Clinical Trial PV
Hello all. Haven't posted here in a while. My background is 57, female, PV for about 8 years. Platelets were well over a million initially. Treating on Peg Interferon for 3 years with numbers well under control, however rotten IBS side effects from the Peg. My dosage is 45 mcg weekly, never increased
Hello all. Haven't posted here in a while. My background is 57, female, PV for about 8 years. Platelets were well over a million initially. Treating on Peg Interferon for 3 years with numbers well under control, however rotten IBS side effects from the Peg. My dosage is 45 mcg weekly, never increased
Miriammusic
in
MPN Voice
3 years ago
Pegasus interferon piles
I have been on Pegasys interferon for 9 weeks and I am increasingly being bothered by very painful piles I wondered if anyone else had experienced this problem which has only occurred after having Pegasus thank you
I have been on Pegasys interferon for 9 weeks and I am increasingly being bothered by very painful piles I wondered if anyone else had experienced this problem which has only occurred after having Pegasus thank you
Hughley
in
MPN Voice
3 years ago
Recently diagnosed with PV
Hi everyone, this is first time I am posting here. I am a member of this forum already few months and I am really happy I've found this forum with all these useful information about MPN. I come from and live in Slovakia (sorry for my English, I am not a native speaker :)) I was diagnosed with PV Jak2
Hi everyone, this is first time I am posting here. I am a member of this forum already few months and I am really happy I've found this forum with all these useful information about MPN. I come from and live in Slovakia (sorry for my English, I am not a native speaker :)) I was diagnosed with PV Jak2
DariBee
in
MPN Voice
3 years ago
Change to Interferon - feeling awful
Hi friends I am on my third week of interferon and I am feeling awful. I still have the big red blotches on my stomach but I also feel very swimmy and dizzy all the time to the point I feel I am going to fall. I have racing heartbeats, waking every hour with terrible joint pain which I had with Hydroxy
Hi friends I am on my third week of interferon and I am feeling awful. I still have the big red blotches on my stomach but I also feel very swimmy and dizzy all the time to the point I feel I am going to fall. I have racing heartbeats, waking every hour with terrible joint pain which I had with Hydroxy
jillydabrat
in
MPN Voice
3 years ago
Health anxiety and half beta prograne 80 mg slow release
Can someone give me advice please... I'm anxious about taking 80mg half beta prograne slow release.. I suffer so so much with ectopics. Right throughout the day... I also wake up in the night and my heart rate increases to around 130 bump I have has ecgs and a 24hr monitor a few years back. I also had
Can someone give me advice please... I'm anxious about taking 80mg half beta prograne slow release.. I suffer so so much with ectopics. Right throughout the day... I also wake up in the night and my heart rate increases to around 130 bump I have has ecgs and a 24hr monitor a few years back. I also had
Rachel_Welsby
in
AF Association
3 years ago
French research on the most grave Covid
Interesting post I found just now and wondered how it might be affected by CLL ..has anyone else seen anything about this? By O.S.F. Posted on 08/23/2021 at 12:33 Two studies published at the end of last week establish that two types of predisposition, which mainly affect men and the elderly, promote
Interesting post I found just now and wondered how it might be affected by CLL ..has anyone else seen anything about this? By O.S.F. Posted on 08/23/2021 at 12:33 Two studies published at the end of last week establish that two types of predisposition, which mainly affect men and the elderly, promote
RosettaClapp
in
CLL Support
3 years ago
Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue
I would like to ask whether there are such patients with myelofibrosis. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly. This decline is continuous and may be the trend of slow decline for several years
I would like to ask whether there are such patients with myelofibrosis. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly. This decline is continuous and may be the trend of slow decline for several years
merlisa
in
MPN Voice
3 years ago
Side effects of PEG
In discussing the pros/cons of moving from Hydroxy Urea to PEG Interferon, my MPN specialist citied one side effect of PEG as the possibility of activating latent autoimmune diseases that could be ābrewingā in oneās system such as rheumatoid arthritis. This really surprised me as I thought the only side
In discussing the pros/cons of moving from Hydroxy Urea to PEG Interferon, my MPN specialist citied one side effect of PEG as the possibility of activating latent autoimmune diseases that could be ābrewingā in oneās system such as rheumatoid arthritis. This really surprised me as I thought the only side
jevans59
in
MPN Voice
3 years ago
Interferon Rash
Hi guys I am on my second weekly injection of Interferon. When I went to inject into my tummy area I noticed the site of my first injection was a red circular rash. It wasnāt itchy or sore, just a red rash. I injected on the other side of my tummy this time and sure enough a red rash appeared. The
Hi guys I am on my second weekly injection of Interferon. When I went to inject into my tummy area I noticed the site of my first injection was a red circular rash. It wasnāt itchy or sore, just a red rash. I injected on the other side of my tummy this time and sure enough a red rash appeared. The
jillydabrat
in
MPN Voice
3 years ago
Texas MPN Workshop 2021 | Promising trials in polycythemia vera
Abdulraheem Yacoub, MD, MBBS, The University of Kansas, Westwood, KS, discusses upcoming trials investigating the treatment of polycythemia vera, namely trials exploring pegylated interferons and hepcidin inhibitors which have reported promising preliminary clinical outcomes. https://www.vjhemonc.com
Abdulraheem Yacoub, MD, MBBS, The University of Kansas, Westwood, KS, discusses upcoming trials investigating the treatment of polycythemia vera, namely trials exploring pegylated interferons and hepcidin inhibitors which have reported promising preliminary clinical outcomes. https://www.vjhemonc.com
Manouche
in
MPN Voice
3 years ago
ET - Pregnancy
Iām new to forum. Diagnosed in 2017 with ET, JAK2+. Baby aspirin. Recently had my check 6 month review and all ok. My platelets are stable at ~850. Weāre trying for another baby, which is a rollercoaster in itself. I donāt know anyoneās pregnancy that was quite so complicated as mine. Seems quite daunting
Iām new to forum. Diagnosed in 2017 with ET, JAK2+. Baby aspirin. Recently had my check 6 month review and all ok. My platelets are stable at ~850. Weāre trying for another baby, which is a rollercoaster in itself. I donāt know anyoneās pregnancy that was quite so complicated as mine. Seems quite daunting
Anniepops112
in
MPN Voice
3 years ago
Breathlessness
Struggling with breathlessness, I was hoping interferon would help this, but doesn't seem to be. I have ET and has no says it's not a symptom.
Struggling with breathlessness, I was hoping interferon would help this, but doesn't seem to be. I have ET and has no says it's not a symptom.
ciye
in
MPN Voice
3 years ago
Booster shots?
Hi all, Iām curious on the consensus regarding a third booster shot given the recent recommendation for the immunosuppressed. Does ET treated with the max interferon dose count, do you think? I am thinking that it is better to err on the side of caution and get one. I would love to hear of any recommendations
Hi all, Iām curious on the consensus regarding a third booster shot given the recent recommendation for the immunosuppressed. Does ET treated with the max interferon dose count, do you think? I am thinking that it is better to err on the side of caution and get one. I would love to hear of any recommendations
Purple478273
in
MPN Voice
3 years ago
Two Questions. Interferon and JAK %
Had by 3 monthly consultation yesterday, bloods all ok, but my cough is still there.. The consultants are unaware of any possible link to interferon and have referred me back to my GP, the GP has ordered a chest X ray, clear, changed my BP pills, so he has very little else to go on... The consultants
Had by 3 monthly consultation yesterday, bloods all ok, but my cough is still there.. The consultants are unaware of any possible link to interferon and have referred me back to my GP, the GP has ordered a chest X ray, clear, changed my BP pills, so he has very little else to go on... The consultants
shiftzz
in
MPN Voice
3 years ago
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