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Nebuliser
My consultant has recommended saline through a nebuliser, this I have had to buy, approx. £50, and is just like breathing in cold fog!! I can't see how this helps lung problems, any ideas?
My consultant has recommended saline through a nebuliser, this I have had to buy, approx. £50, and is just like breathing in cold fog!! I can't see how this helps lung problems, any ideas?
Two2sheds
in
Lung Conditions Community Forum
7 years ago
Ocaliva
Not real sure why but my heptologist is wanting me to start taking 10mg Ocaliva on Mon- Wed-Fri. Then take 5mg Ocaliva on the days between for one month, then 10mg from then on. I thought that the 5 mg was doing great. I sent him a message through our website asking why this is & am waiting on his reply
Not real sure why but my heptologist is wanting me to start taking 10mg Ocaliva on Mon- Wed-Fri. Then take 5mg Ocaliva on the days between for one month, then 10mg from then on. I thought that the 5 mg was doing great. I sent him a message through our website asking why this is & am waiting on his reply
Shulsey
in
PBC Foundation
7 years ago
PBC Antibody GP 210 What does it mean?
The reason for the title is mainly for people who may come along and have my diagnosis, also it will hopefully show up in Google searches, but not be as scary as the medical papers and Wikipedia. I have got a few answers about it. Addenbrookes have confirmed that it is a more progressive/aggressive
The reason for the title is mainly for people who may come along and have my diagnosis, also it will hopefully show up in Google searches, but not be as scary as the medical papers and Wikipedia. I have got a few answers about it. Addenbrookes have confirmed that it is a more progressive/aggressive
Jo_Br
in
PBC Foundation
7 years ago
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Dilation
So I had a mock transfer and saline investigation today. They managed to get the saline catheter through but not the mock transfer one (or any of them) which is different. So it looks like I'll need dilation. A bit annoyed that the clinic didn't explain more about when this will all happen etc following
So I had a mock transfer and saline investigation today. They managed to get the saline catheter through but not the mock transfer one (or any of them) which is different. So it looks like I'll need dilation. A bit annoyed that the clinic didn't explain more about when this will all happen etc following
Fredaflintstone
in
Fertility Network UK
7 years ago
Update: Labs
Numbers are moving like they should. Im pleased with this. The Ocaliva & Urso seem to be working well together. Praying they continue to move the numbers. Thank you everyone for all of your support & prayers. Back in two weeks for the same labs. Stay strong❣️
Numbers are moving like they should. Im pleased with this. The Ocaliva & Urso seem to be working well together. Praying they continue to move the numbers. Thank you everyone for all of your support & prayers. Back in two weeks for the same labs. Stay strong❣️
Shulsey
in
PBC Foundation
7 years ago
Need hugs...in hospital with post op viral meningitis
Sorry for the wingy post but I am feeling a bit sorry for myself. Although my excision op was successful last Tuesday I developed a stiff neck and started vomiting. Ended up being transfer to a neural consultant at the NNN main hospital with suspect meningitis. They tried 2 lumbar punctures but the doctor
Sorry for the wingy post but I am feeling a bit sorry for myself. Although my excision op was successful last Tuesday I developed a stiff neck and started vomiting. Ended up being transfer to a neural consultant at the NNN main hospital with suspect meningitis. They tried 2 lumbar punctures but the doctor
Starry
in
Endometriosis UK
7 years ago
I missed a chest infection??
Ok so basically, my asthma hasn't been great in recent weeks, and I've been waking up increasingly more often with a 'stuffy' chest. I've been getting more of a cough. But I brushed it off assuming it was to do with seasonal allergies or something. I ended up in A&E on Sunday night because I'd had
Ok so basically, my asthma hasn't been great in recent weeks, and I've been waking up increasingly more often with a 'stuffy' chest. I've been getting more of a cough. But I brushed it off assuming it was to do with seasonal allergies or something. I ended up in A&E on Sunday night because I'd had
gantsdacier
in
Asthma Community Forum
7 years ago
Has any one diagnosed with PBC gone untreated for any length of time?
Question? Has anyone here after being diagnosed spent a significant time without any treatment? I ask because I first had an allergic response to Urso then when we tried again I was classified as a none responder. So I lived with the PBC diagnosis for five years without treatment. I now am on Ocaliva
Question? Has anyone here after being diagnosed spent a significant time without any treatment? I ask because I first had an allergic response to Urso then when we tried again I was classified as a none responder. So I lived with the PBC diagnosis for five years without treatment. I now am on Ocaliva
Q8Cooper
in
PBC Foundation
7 years ago
Hello I am brand new to the group, and sure am glad to have found you!
Hi everyone, I am brand new to this site and I have enjoyed ready everyone's comments. It sure helps to know there are other people on the same journey and I was diagnosed with PBC, NASH, auto-immune hepatitis, granulomas and sarcoidosis in my liver in 2002. The diagnosis was made through LFTs, positive
Hi everyone, I am brand new to this site and I have enjoyed ready everyone's comments. It sure helps to know there are other people on the same journey and I was diagnosed with PBC, NASH, auto-immune hepatitis, granulomas and sarcoidosis in my liver in 2002. The diagnosis was made through LFTs, positive
Q8Cooper
in
PBC Foundation
7 years ago
Adverse response to Urso so put on Ocaliva. My alkaline phosphatase remains around 300. How do I know if the Ocaliva is working?
Hi, I am a 56yr old female diagnosed with PBC six years ago. I had a severe reaction to Ursol the first time I tried it, waited a year and tried it again but was unresponsive to it. I started Ocaliva 5mg for three months and since my alkaline phosphatase remained around 300 my doctor increased the
Hi, I am a 56yr old female diagnosed with PBC six years ago. I had a severe reaction to Ursol the first time I tried it, waited a year and tried it again but was unresponsive to it. I started Ocaliva 5mg for three months and since my alkaline phosphatase remained around 300 my doctor increased the
Q8Cooper
in
PBC Foundation
7 years ago
When to dial 999 and/or go to A & E - and when to just ride it out at home?
Hi, I had a nasty 8 hour AF episode this week. It affects me badly - chest pain, nausea, dizziness, weakness - and I can hardly move. At first I thought it was fairly mild, pulse up to 140, but later it really kicked in, pulse up to 220. At that point I'd had enough and was scared and for the first time
Hi, I had a nasty 8 hour AF episode this week. It affects me badly - chest pain, nausea, dizziness, weakness - and I can hardly move. At first I thought it was fairly mild, pulse up to 140, but later it really kicked in, pulse up to 220. At that point I'd had enough and was scared and for the first time
KathFrances
in
AF Association
7 years ago
Fingers Crossed
I started the Ocaliva yesterday. After a bit of a battle with the insurance it's coveted. Fingers crossed this works to lower my enzymes:-)
I started the Ocaliva yesterday. After a bit of a battle with the insurance it's coveted. Fingers crossed this works to lower my enzymes:-)
Shulsey
in
PBC Foundation
7 years ago
Side effects of Ocaliva
Ever since I am taking Ocaliva I feel stiffness in my knees. My doc did some tests and one of them is Sed rate. My sed rate is 37 which is higher for my age. Is there anyone who has higher sed rate even if they don't take Ocaliva?
Ever since I am taking Ocaliva I feel stiffness in my knees. My doc did some tests and one of them is Sed rate. My sed rate is 37 which is higher for my age. Is there anyone who has higher sed rate even if they don't take Ocaliva?
Mg40
in
PBC Foundation
7 years ago
Finally seen Hepatologist
Well I finally seen the Hepatologist and I really liked him. He actually sat down and explained things and answered any questions I had without seeming to be in a hurry. Now I see every 6 months along with my Gastro. He did more blood work and sent me to have a fibro scan and a dexa scan. My ALP is still
Well I finally seen the Hepatologist and I really liked him. He actually sat down and explained things and answered any questions I had without seeming to be in a hurry. Now I see every 6 months along with my Gastro. He did more blood work and sent me to have a fibro scan and a dexa scan. My ALP is still
Lisa15
in
PBC Foundation
7 years ago
Good news
I just got off of the phone with a very nice lady from Indiana university hospital. I will be getting my Ocaliva in the mail very soon. Prayers that this will bring my numbers down to where they aren't crazy high. I never thought I would be so excited about starting a new medication😏🤔
I just got off of the phone with a very nice lady from Indiana university hospital. I will be getting my Ocaliva in the mail very soon. Prayers that this will bring my numbers down to where they aren't crazy high. I never thought I would be so excited about starting a new medication😏🤔
Shulsey
in
PBC Foundation
7 years ago
Any COPD clinical trials near Stockport?
I have Bronchiectasis, which comes under the umbrella of COPD. I have an electric nebulizer on prescription, which uses a saline solution, but lately it is becoming less effective. I've also tried a "Flutter"with mixed results. I had to buy that myself for £50!!! I am willing to go on any clinical trials
I have Bronchiectasis, which comes under the umbrella of COPD. I have an electric nebulizer on prescription, which uses a saline solution, but lately it is becoming less effective. I've also tried a "Flutter"with mixed results. I had to buy that myself for £50!!! I am willing to go on any clinical trials
Wotnoair41
in
Lung Conditions Community Forum
7 years ago
A Royal Pain
Mounds of prescription and over-the-counter medications are sold and swallowed to relieve chronic pain, but it seems that placebos – pills or procedures that supposedly have no physiological effect – may sometimes be even more effective than “real” drugs. The placebo effect is probably involved in
Mounds of prescription and over-the-counter medications are sold and swallowed to relieve chronic pain, but it seems that placebos – pills or procedures that supposedly have no physiological effect – may sometimes be even more effective than “real” drugs. The placebo effect is probably involved in
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
7 years ago
Ocaliva just came across this please read if you struggle with urso like me 😕
I have just come across this site https://ocaliva.com/ if you find it hard to take urso like me, this is another medication you can take for pbc 🤗😲 I didn't think there was any other medication, please have a look, if likevme you struggle taking urso xxx hope this helps! 😊💪🏻
I have just come across this site https://ocaliva.com/ if you find it hard to take urso like me, this is another medication you can take for pbc 🤗😲 I didn't think there was any other medication, please have a look, if likevme you struggle taking urso xxx hope this helps! 😊💪🏻
Shazzamattaz
in
British Liver Trust
7 years ago
Ocaliva cost??
Where are you from? I'm currently taking URSO (started in early January) and while it's making my numbers better...300s down from 900s it's still not where doctor wants it. He has me taking it 3 more months to see if it keeps dropping. If not he says we'll start Ocaliva at that point. He said sometimes
Where are you from? I'm currently taking URSO (started in early January) and while it's making my numbers better...300s down from 900s it's still not where doctor wants it. He has me taking it 3 more months to see if it keeps dropping. If not he says we'll start Ocaliva at that point. He said sometimes
marty102
in
PBC Foundation
7 years ago
Add too hep visit
I forgot you add that I am starting Ocaliva as soon as my insurance okays it. Dr says that it can take a little time for that😕. Fingers crossed that my labs will start to become lower & I can start to feel a little closer to normal.
I forgot you add that I am starting Ocaliva as soon as my insurance okays it. Dr says that it can take a little time for that😕. Fingers crossed that my labs will start to become lower & I can start to feel a little closer to normal.
Shulsey
in
PBC Foundation
7 years ago
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