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In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of Ocaliva. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision. Those who belong to the PBC Foundation can
In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of Ocaliva. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision. Those who belong to the PBC Foundation can
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
PBC Foundation Update regarding Ocaliva
Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June 2024 about the future of obeticholic acid (OCA or Ocaliva) in Europe. We understand that this announcement may cause concern, especially amongst
Obeticholic Acid in Europe 29/6/2024 We are issuing this guidance in response to the announcement made by the European Medicines Agency (EMA) on 28th June 2024 about the future of obeticholic acid (OCA or Ocaliva) in Europe. We understand that this announcement may cause concern, especially amongst
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
Couldn't agree more..
I can't even begin to imagine how this decision to no longer offer Ocaliva to European patients will impact their lives. Many patients take this because of not being able to tolerate Urso or being a partial responder to it. Dr. Gish is truly a defender of what he knows is best for the PBC community
I can't even begin to imagine how this decision to no longer offer Ocaliva to European patients will impact their lives. Many patients take this because of not being able to tolerate Urso or being a partial responder to it. Dr. Gish is truly a defender of what he knows is best for the PBC community
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
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Saline Solution IV
When in Scotland the winter before last I inquired in a post here about a Saline Solution IV. The how not to heal and why crowd went berserk. In the USA we have drip bars where one can purchase a Saline Solution IV. The cost is around $100.00 USD. When I travel, go through the stress of improved
When in Scotland the winter before last I inquired in a post here about a Saline Solution IV. The how not to heal and why crowd went berserk. In the USA we have drip bars where one can purchase a Saline Solution IV. The cost is around $100.00 USD. When I travel, go through the stress of improved
WIZARD6787
in
Pernicious Anaemia Society
3 months ago
Tips on how to recover from an ablation
Just had a RF ablation for PAF yesterday at the Harefield Heart Hospital. I'm glad to say the procedure went well. I have two tips to help. 1) ask for your canula to be inserted in the back of your hand rather than just under the elbow.It'smuch more comfortable and easier to find a vein and to extract
Just had a RF ablation for PAF yesterday at the Harefield Heart Hospital. I'm glad to say the procedure went well. I have two tips to help. 1) ask for your canula to be inserted in the back of your hand rather than just under the elbow.It'smuch more comfortable and easier to find a vein and to extract
manabouttown
in
Atrial Fibrillation Support
3 months ago
Back Again
Hello everyone, sorry in advance for the mammoth post. I was last on this forum about 7-8 years ago in 2015/2016 after my previous symptom free asthma flared up badly and left me very sick (back on inhalers, steroids, and multiple hospital admissions). We managed to get my asthma back under control
Hello everyone, sorry in advance for the mammoth post. I was last on this forum about 7-8 years ago in 2015/2016 after my previous symptom free asthma flared up badly and left me very sick (back on inhalers, steroids, and multiple hospital admissions). We managed to get my asthma back under control
Beth_19
in
Asthma Community Forum
3 months ago
Elafibranor
I’m almost a little reluctant to ask this question, but is anyone taking this new drug? My hepatologist would like me to try it considering Ocaliva isn’t doing what it did in the first few years of taking it. I am in the process of filling out forms for IPSEN. I have no prescription insurance because
I’m almost a little reluctant to ask this question, but is anyone taking this new drug? My hepatologist would like me to try it considering Ocaliva isn’t doing what it did in the first few years of taking it. I am in the process of filling out forms for IPSEN. I have no prescription insurance because
gwillistexas
in
PBC Foundation
3 months ago
Does anyone take this supplement?
I have been doing a lot of research on how to fix cramping. Let me first say, no pickle juice does not work. I also do not have fluid taken off during dialysis. I add 400ml of saline each treatment. I also have no fluid restrictions and so I do drink a lot of water. And none of my mineral labs indicate
I have been doing a lot of research on how to fix cramping. Let me first say, no pickle juice does not work. I also do not have fluid taken off during dialysis. I add 400ml of saline each treatment. I also have no fluid restrictions and so I do drink a lot of water. And none of my mineral labs indicate
Bassetmommer
in
Kidney Dialysis
3 months ago
Could MCAS a possibility?
Hello everyone, I have been wondering for a while if I could have MACS. Last year I was diagnosed with a Raw Pecan allergy, borderline brazil and salami allergy through raw food skin to skin prick testing and given epi pens. My immunologist at the time did not want to risk it as I have asthma and
Hello everyone, I have been wondering for a while if I could have MACS. Last year I was diagnosed with a Raw Pecan allergy, borderline brazil and salami allergy through raw food skin to skin prick testing and given epi pens. My immunologist at the time did not want to risk it as I have asthma and
Hidden
in
The UK Mastocytosis Support Group
3 months ago
Important from The PBC Foundation....
We are asking for your help. 4/6/2024 Very directly. Very succinctly. We need your help. This is the most important thing the Foundation has ever worked on: more important than the surveys, more important than the helpline, more important than the name change. We are writing a letter which we
We are asking for your help. 4/6/2024 Very directly. Very succinctly. We need your help. This is the most important thing the Foundation has ever worked on: more important than the surveys, more important than the helpline, more important than the name change. We are writing a letter which we
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
Peritoneal dialysis catheter block
Hi everyone, for those on PD, have you had any catheter complications or blockages and how were they resolved? My father suddenly started to have his PD fluid drain bloody two weeks ago. We notified the nurse/dr who are both unresponsive and just assumed it’s a burst blood vessel. We requested a sample
Hi everyone, for those on PD, have you had any catheter complications or blockages and how were they resolved? My father suddenly started to have his PD fluid drain bloody two weeks ago. We notified the nurse/dr who are both unresponsive and just assumed it’s a burst blood vessel. We requested a sample
Marbella17
in
Kidney Disease
3 months ago
do I go ahead with a laparoscopy?
please help me - you’re the only community that who actually helps and understands! I have had 3 miscarriages(natural) - all early. Since my first miscarriage 14 months ago I have been in constant pain. 2/10 half the month and maybe 6-7 for maybe 1 week. I have heavy periods and recently clotting, especially
please help me - you’re the only community that who actually helps and understands! I have had 3 miscarriages(natural) - all early. Since my first miscarriage 14 months ago I have been in constant pain. 2/10 half the month and maybe 6-7 for maybe 1 week. I have heavy periods and recently clotting, especially
Maybeendo
in
Endometriosis UK
4 months ago
WHAT IS THE BEST DIET FOR BRONCHIECTASIS
I HAVE TONS of mucas all the time tho use saline neb and oscillating vest twice a day. adjustable bed but mucas still drains what is the best diet for this illness\?
I HAVE TONS of mucas all the time tho use saline neb and oscillating vest twice a day. adjustable bed but mucas still drains what is the best diet for this illness\?
Lapis5
in
Lung Conditions Community Forum
4 months ago
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
4 months 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
4 months 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
4 months ago
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
4 months 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)
4 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
4 months ago
Finally, off DA but perhaps not for much longer
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect. All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin
MrVimes
in
Restless Legs Syndrome
2 months ago
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