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Intercept Patient Update for Ocaliva
Hopefully this will allay fears, however, we now have the info below to query any different dosing amounts of regularity of dose. http://ir.interceptpharma.com/releasedetail.cfm?releaseid=1041483 OCALIVA UPDATE FROM INTERCEPT for Patients as seen on PBCers Organisation. For people with PBC and other
Hopefully this will allay fears, however, we now have the info below to query any different dosing amounts of regularity of dose. http://ir.interceptpharma.com/releasedetail.cfm?releaseid=1041483 OCALIVA UPDATE FROM INTERCEPT for Patients as seen on PBCers Organisation. For people with PBC and other
Jo_Br
in
PBC Foundation
7 years ago
FDA Drug Safety Communication: FDA warns about serious liver injury with Ocaliva (obeticholic acid) for rare chronic liver disease
It sounds alarmist, it seems mainly to be incorrect dosage given and as a patient being considered for it or taking it I would want to know. https://www.fda.gov/Drugs/DrugSafety/ucm576656.htm
It sounds alarmist, it seems mainly to be incorrect dosage given and as a patient being considered for it or taking it I would want to know. https://www.fda.gov/Drugs/DrugSafety/ucm576656.htm
Jo_Br
in
PBC Foundation
7 years ago
Saline Inhalation
Hi, I have been asked to consider hypertonic saline in-between my twice daily salbutamol and gentamicin nebuliser. I am sure it would help with thick sputum clearance but i have had swollen ankles for about 15 years for which i take bendroflumethiazide but this does not make the swelling disappear. I
Hi, I have been asked to consider hypertonic saline in-between my twice daily salbutamol and gentamicin nebuliser. I am sure it would help with thick sputum clearance but i have had swollen ankles for about 15 years for which i take bendroflumethiazide but this does not make the swelling disappear. I
Hidden
in
Lung Conditions Community Forum
7 years ago
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Ductopenic Variant anybody?
I seem to be picking up the house phone, it does not ring much and it is always medical stuff. Addenbrookes have had their meeting about me, that even makes me feel a bit worried. So as well as being the 5% AMA negative George has read my latest presenting issues and bloods and said there is a possibility
I seem to be picking up the house phone, it does not ring much and it is always medical stuff. Addenbrookes have had their meeting about me, that even makes me feel a bit worried. So as well as being the 5% AMA negative George has read my latest presenting issues and bloods and said there is a possibility
Jo_Br
in
PBC Foundation
7 years ago
Safe to mix and inject?
Hi Everyone. Quick question. Greatful for any advice. Is this powder safe to mix with sterile saline and inject? Thank you in advance. Ship
Hi Everyone. Quick question. Greatful for any advice. Is this powder safe to mix with sterile saline and inject? Thank you in advance. Ship
ShipChef
in
Pernicious Anaemia Society
7 years ago
Feeling confused, frustrated and worried.
An update, I seem to have been writing no positive posts of late. My latest 6 weeks check up at Addenbrookes, again I did not see George Mell, he is only seeing new patients and each time I attend I seem to be more worried and find that I am not getting answers or politician type answers. I even asked
An update, I seem to have been writing no positive posts of late. My latest 6 weeks check up at Addenbrookes, again I did not see George Mell, he is only seeing new patients and each time I attend I seem to be more worried and find that I am not getting answers or politician type answers. I even asked
Jo_Br
in
PBC Foundation
7 years ago
THERE IS NOT MUCH HOPE FOR ME
Well after doing well on the saline nebs no repeat chest problems since the start of August. Was having trouble hearing in the ear recently had an infection in saw the doctor today and I have apparently I have ruptured my ear drum. Now it is a lengthy wait for an appointment with our ENT. As for the
Well after doing well on the saline nebs no repeat chest problems since the start of August. Was having trouble hearing in the ear recently had an infection in saw the doctor today and I have apparently I have ruptured my ear drum. Now it is a lengthy wait for an appointment with our ENT. As for the
Hidden
in
Lung Conditions Community Forum
7 years ago
This was on a U. S. A. PBC Forum
Dear PBCers, Thank you, Carol and Cathy, for jumping on the phone at such short notice. Enclosed below is the statement discussed on the call, which you are free to share with your members. The Dear HCP letter is available here on OcalivaHCP.com. https://ocalivahcp.com/_assets/_pdfs/Ocaliva-Dear-HCP-Letter
Dear PBCers, Thank you, Carol and Cathy, for jumping on the phone at such short notice. Enclosed below is the statement discussed on the call, which you are free to share with your members. The Dear HCP letter is available here on OcalivaHCP.com. https://ocalivahcp.com/_assets/_pdfs/Ocaliva-Dear-HCP-Letter
Ktltel
in
PBC Foundation
7 years ago
MUCUS :Cant breathe with Post nasal drip and blockage in throat
My daughter is really struggling and can't sing properly, because she feels her throats blocked and she's loads of 'gunk'. Her voice coming out squeaky with no power. Had tonsils and adenoids out before Xmas but seems worse now . Trying everything, nasal sprays, antu-inflamatory, antihistamines, sudafed
My daughter is really struggling and can't sing properly, because she feels her throats blocked and she's loads of 'gunk'. Her voice coming out squeaky with no power. Had tonsils and adenoids out before Xmas but seems worse now . Trying everything, nasal sprays, antu-inflamatory, antihistamines, sudafed
ajfoth
in
Lung Conditions Community Forum
7 years ago
Oxford bioscience
Anyone use Oxford Bioscience pure B12 and mix it themselves for their injections? My 20ml just arrived in the mail. I have read good reviews on their B12 but I am a lil worried since their bottle has a screw top. After adding the saline will it stay sterile with hsving to open and close the vial some
Anyone use Oxford Bioscience pure B12 and mix it themselves for their injections? My 20ml just arrived in the mail. I have read good reviews on their B12 but I am a lil worried since their bottle has a screw top. After adding the saline will it stay sterile with hsving to open and close the vial some
Hopefulandpositive
in
Pernicious Anaemia Society
7 years ago
Ocaliva and side effects
Hi all, URSO isn't working for me as it should. I was diagnosed 2 years ago and my Alk phos results was over 1000. They are now at 299 but still not reducing as they should. I've been offered to change to Ocaliva or to take part in a clinical trial. I'm concerned about the side effects of Ocaliva but
Hi all, URSO isn't working for me as it should. I was diagnosed 2 years ago and my Alk phos results was over 1000. They are now at 299 but still not reducing as they should. I've been offered to change to Ocaliva or to take part in a clinical trial. I'm concerned about the side effects of Ocaliva but
Fifibee11
in
PBC Foundation
7 years ago
Short Lived responder to Urso
I fell I have not been here for ages. I was away on my hols for a fortnight, Granny care has been pretty full on since. My last visit to Addenbrookes confirmed the Anti-GP 210 marked a more progressive journey but support and treatment would be the same. While there had usual blood tests on the day,
I fell I have not been here for ages. I was away on my hols for a fortnight, Granny care has been pretty full on since. My last visit to Addenbrookes confirmed the Anti-GP 210 marked a more progressive journey but support and treatment would be the same. While there had usual blood tests on the day,
Jo_Br
in
PBC Foundation
7 years ago
Recent labs
Sorry I had forgotten to post my latest labs, so, here they are. Wondering if they've gone the opposite direction this time due to the alternation of Ocaliva 5mg & Ocaliva 10mg. Pluscvs would anyone thank it could be due to my varicies bleeding again? I see my heptologist at Indiana university on Sept
Sorry I had forgotten to post my latest labs, so, here they are. Wondering if they've gone the opposite direction this time due to the alternation of Ocaliva 5mg & Ocaliva 10mg. Pluscvs would anyone thank it could be due to my varicies bleeding again? I see my heptologist at Indiana university on Sept
Shulsey
in
PBC Foundation
7 years ago
Fostair
Hi i have several health problems including ashma from childhood "im now nearly 60" c.o.p.d. since 2009 ihave a home nebuliser which i have to use up to 4 times a day ,so first thing when i wake up i have to take my nebs saline first followed by ventolin and ipratropium .i used to be on symbicort 400
Hi i have several health problems including ashma from childhood "im now nearly 60" c.o.p.d. since 2009 ihave a home nebuliser which i have to use up to 4 times a day ,so first thing when i wake up i have to take my nebs saline first followed by ventolin and ipratropium .i used to be on symbicort 400
Frankjones
in
Asthma Community Forum
7 years ago
Looking for donor egg success stories after failed first attempt
Hi all, we had a failed DE cycle in June after having a top grade blastocyst transferred. We're about to have another go. The consultant didn't run any additional tests except taking a look inside with a saline solution ultrasound and I also had a dilation to help a smoother transfer next time. Has anyone
Hi all, we had a failed DE cycle in June after having a top grade blastocyst transferred. We're about to have another go. The consultant didn't run any additional tests except taking a look inside with a saline solution ultrasound and I also had a dilation to help a smoother transfer next time. Has anyone
Fredaflintstone
in
Fertility Network UK
7 years ago
Really ticked off
So, I haven't been on here in a while and you may or may not remember, I could not tolerate urso at all. I lost my hair, I was nauseous all the time, I itched like crazy and my stomach aches woke me up at night. I have been off of it over 2 years, feeling fine I might add. I have been trying to get
So, I haven't been on here in a while and you may or may not remember, I could not tolerate urso at all. I lost my hair, I was nauseous all the time, I itched like crazy and my stomach aches woke me up at night. I have been off of it over 2 years, feeling fine I might add. I have been trying to get
donna01
in
PBC Foundation
7 years ago
SCD treatments.
As far as I know there is no cure for SCD. The Haematologists in the UK, try to manage the painful episodes with strong opioids e.g. OxyContin, morphine, Tramadol etc. They also try to keep you well hydrated with bags of saline and also increase your haemoglobin numbers by blood transfusions. My GP
As far as I know there is no cure for SCD. The Haematologists in the UK, try to manage the painful episodes with strong opioids e.g. OxyContin, morphine, Tramadol etc. They also try to keep you well hydrated with bags of saline and also increase your haemoglobin numbers by blood transfusions. My GP
Feio
in
Living with Sickle Cell Disease
7 years ago
Need a doctor
Does anyone in southern Indiana have a recommendation of a good doctor or know how I can get in to see someone at IU med center? My doctor has not prescribed Urso or Ocaliva and I am getting worse by the day with jaundice, swelling in abdomen and feet and legs, severe fatigue and I feel horrible. Thanks
Does anyone in southern Indiana have a recommendation of a good doctor or know how I can get in to see someone at IU med center? My doctor has not prescribed Urso or Ocaliva and I am getting worse by the day with jaundice, swelling in abdomen and feet and legs, severe fatigue and I feel horrible. Thanks
Mary2017
in
PBC Foundation
7 years ago
de ja vue
well here we go again antibiotics number 8 this time i called the shots got ciprofloxacilin for two weeks not one and something for deep cleaning the lungs a saline neb 4times a day for three weeks initially.
well here we go again antibiotics number 8 this time i called the shots got ciprofloxacilin for two weeks not one and something for deep cleaning the lungs a saline neb 4times a day for three weeks initially.
Hidden
in
Lung Conditions Community Forum
7 years ago
Labs
The numbers are still moving, seems like they're moving slower now. Still taking the Urso with Ocaliva 5mg. Waiting in the Ocaliva 10mg to see if they start moving more
The numbers are still moving, seems like they're moving slower now. Still taking the Urso with Ocaliva 5mg. Waiting in the Ocaliva 10mg to see if they start moving more
Shulsey
in
PBC Foundation
7 years ago
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