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Wednesday's Word
[u][i]
Second line therapy
[/i][/u] [u][i][/i][/u]
This a term used In PBC a patient does not respond to Urso - usually within a year's time from the start of dosing. A different drug of choice is needed.
The only approved second line treatment is the use of Ovaliva (obeticholic acid
[u][i]
Second line therapy
[/i][/u] [u][i][/i][/u]
This a term used In PBC a patient does not respond to Urso - usually within a year's time from the start of dosing. A different drug of choice is needed.
The only approved second line treatment is the use of Ovaliva (obeticholic acid
DonnaBoll
Administrator
in
PBC Foundation
3 days ago
Ocaliva and side effects
Hello everyone! I recently started taking ocaliva. I don't know if they help, I'm due to go and have some blood tests done. Pros...the sharp pain I used to occasionally have in the liver area is gone. Cons. The itchy skin drives me insane, can't sleep, I'm always tired and to add insult to injury some
Hello everyone! I recently started taking ocaliva. I don't know if they help, I'm due to go and have some blood tests done. Pros...the sharp pain I used to occasionally have in the liver area is gone. Cons. The itchy skin drives me insane, can't sleep, I'm always tired and to add insult to injury some
Beatris03
in
PBC Foundation
3 days ago
First Time Nebuliser Use
Hi everyone, my Respiratory Consultant has suggested I try nebulising with saline to help clear my chest and hopefully reduce the problem of mucus plugging which then impacts my breathing obviously. I’ve bought the nebuliser and have the saline on prescription. My query is I’ve read when using for the
Hi everyone, my Respiratory Consultant has suggested I try nebulising with saline to help clear my chest and hopefully reduce the problem of mucus plugging which then impacts my breathing obviously. I’ve bought the nebuliser and have the saline on prescription. My query is I’ve read when using for the
LizPat30
in
Lung Conditions Community Forum
8 days ago
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Update on tests etc
hi all. Just an update after my recent CT scan, and the dreaded bronchoscopy on Tuesday this week. Obviously haven't had full results of latest CT scan, apart from a short note from my consultant to say there was a 6.5 millimetre nodule in ththe Apex of my right lung. They will monitor it, if it stays
hi all. Just an update after my recent CT scan, and the dreaded bronchoscopy on Tuesday this week. Obviously haven't had full results of latest CT scan, apart from a short note from my consultant to say there was a 6.5 millimetre nodule in ththe Apex of my right lung. They will monitor it, if it stays
Tiggertheterrier
in
Lung Conditions Community Forum
9 days ago
Salt water washing post adult Circumcision week 6
It has now almost been 6 weeks post my circumcision surgery and the dry patches of skin still linger on my glans and frenulum. I have read on this forum elsewhere that salt water washes help in clearing these dry patches. I was wondering if 1) I should dip it in saline solution before or after taking
It has now almost been 6 weeks post my circumcision surgery and the dry patches of skin still linger on my glans and frenulum. I have read on this forum elsewhere that salt water washes help in clearing these dry patches. I was wondering if 1) I should dip it in saline solution before or after taking
Bisyar
in
Men's Health Forum (Penis Health)
9 days ago
Constant uti's
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Lucylou72
in
LUPUS UK
6 months ago
can't get a mucas culture from lungs.
I have had Bronchiectasis for five years and many lung infections.. Pseudomonas etc.and mos of Iv antibiotics. Have never had a problem getting a culure till now.. four times the lab said it was contaminated by oral something or other. So did not run it for respiratory disease. I even went to
I have had Bronchiectasis for five years and many lung infections.. Pseudomonas etc.and mos of Iv antibiotics. Have never had a problem getting a culure till now.. four times the lab said it was contaminated by oral something or other. So did not run it for respiratory disease. I even went to
Lapis5
in
Lung Conditions Community Forum
20 days ago
is my pain Endo + did it cause my miscarriages?
finally a community that I can ask! Please help as I’ve seen so many docs and none can give me an answer. I’ve had 3 miscarriages in 12 months. From ovulation from the 1st pregnancy and ever since I now have lower abdominal pain - maybe 3 out of 4 weeks of the month. I never had this pain before
finally a community that I can ask! Please help as I’ve seen so many docs and none can give me an answer. I’ve had 3 miscarriages in 12 months. From ovulation from the 1st pregnancy and ever since I now have lower abdominal pain - maybe 3 out of 4 weeks of the month. I never had this pain before
Maybeendo
in
Endometriosis UK
27 days ago
Ocaliva
Hi everybody, I’ve just been told that I should now start ocaliva aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Hi everybody, I’ve just been told that I should now start ocaliva aswell as urso I’m so worried about side effects after reading up on it, wondering how many of youse are getting on with it did you have lots of side effects ect!!
Lena2011
in
PBC Foundation
30 days ago
Wednesday's Word
[u]
PP
[/u][u][i]
AR drugs
[/i][/u] - This is a class of drugs used as second line treatment in Urso non responders. These drugs have long been used as a lipid lowering drugs - although now statins are more widely used for this purpose of lowering cholesterol. They are not yet approved by
[u]
PP
[/u][u][i]
AR drugs
[/i][/u] - This is a class of drugs used as second line treatment in Urso non responders. These drugs have long been used as a lipid lowering drugs - although now statins are more widely used for this purpose of lowering cholesterol. They are not yet approved by
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
another pharma update
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
Question on steam/vapour breathing
I have a question for those who use steam/vapour breathing to ease off their symptoms. Do you use distilled water, reagular tap water, or a saline solution? My specialist seemed puzzled when I asked her this, and said that, in principle, a saline solution is optimal. I currently use distilled water.
I have a question for those who use steam/vapour breathing to ease off their symptoms. Do you use distilled water, reagular tap water, or a saline solution? My specialist seemed puzzled when I asked her this, and said that, in principle, a saline solution is optimal. I currently use distilled water.
runcyclexcski
in
Asthma Community Forum
1 month ago
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
1 month ago
Asthma
I'm on a high level of medication for my asthma I've been with lung specialist for 5 years, I was diagnosed with asthma in the 90s but it was mild enough for me to continue work, however as the years increased my asthma was starting to become a problem, well anyway now my asthma has become a real problem
I'm on a high level of medication for my asthma I've been with lung specialist for 5 years, I was diagnosed with asthma in the 90s but it was mild enough for me to continue work, however as the years increased my asthma was starting to become a problem, well anyway now my asthma has become a real problem
Happy103
in
Lung Conditions Community Forum
1 month ago
Rheumatologist advices no reduction of prednisolone while adrenal glands not working and has issued emergency hydrocortisone kit
I've had PMR since October 2020 and managed to get down to 2.5mg of prednisolone in February 2023. But after a flare, I had to raise it to 5mg and have been pain-free since then. I started on methotrexate weekly injections (15mg) in December 2023, with the hope of being able to reduce the prednisolone
I've had PMR since October 2020 and managed to get down to 2.5mg of prednisolone in February 2023. But after a flare, I had to raise it to 5mg and have been pain-free since then. I started on methotrexate weekly injections (15mg) in December 2023, with the hope of being able to reduce the prednisolone
harpsichor
in
PMRGCAuk
1 month ago
What if?
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
Experiences with urso, ocaliva and bezafibrate
Hi everyone!I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
Hi everyone!I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
nickey8
in
PBC Foundation
2 months ago
Better Understanding
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
WIZARD6787
in
Pernicious Anaemia Society
3 months ago
antihistamines
hi 👋🏻 think I need some antihistamines to help my ETD. I’ve been using Sudafed last 2 days because the steroid nasal sprays seem to make my ears sore. I know you can only use them for a few days though. I can literally feel the swelling reducing and then swelling up again. So maybe I need an antihistamine
hi 👋🏻 think I need some antihistamines to help my ETD. I’ve been using Sudafed last 2 days because the steroid nasal sprays seem to make my ears sore. I know you can only use them for a few days though. I can literally feel the swelling reducing and then swelling up again. So maybe I need an antihistamine
Lakeshiker
in
Tinnitus UK
3 months ago
steroid nasal sprays
hi everyone, I’ve been using a steroid nasal spray for ETD and I think it’s making my ears sore and my T louder 🤔 Just wondering if anyone has had similar experiences. My ears get sore and all down the side of my face near my jaw line from my ear to my neck. My right ear registered negative pressure
hi everyone, I’ve been using a steroid nasal spray for ETD and I think it’s making my ears sore and my T louder 🤔 Just wondering if anyone has had similar experiences. My ears get sore and all down the side of my face near my jaw line from my ear to my neck. My right ear registered negative pressure
Lakeshiker
in
Tinnitus UK
3 months ago
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