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Bronchoscopy pain.
I have COPD and had a bronchoscopy and felt fine after but woke in the night gasping for breath and it was bad most of the night . Only a microwave bag helped enough for me to eventually sleep. I expected the sore lungs and throat after probably having a saline flush and a biopsy or two but the pain
I have COPD and had a bronchoscopy and felt fine after but woke in the night gasping for breath and it was bad most of the night . Only a microwave bag helped enough for me to eventually sleep. I expected the sore lungs and throat after probably having a saline flush and a biopsy or two but the pain
Rabbit52
in
Lung Conditions Community Forum
5 years ago
Are these ok for PBCers?
Hello š, I'm totally struggling with my diet (as always š) I'm wanting to exchange a couple of meals a day with Atkins protein shakes. I'm "not" going on the Atkins diet or anything, I plan to incorporate fruit and complex carbohydrates in one meal a day and for a snack etc. But, I was just wondering
Hello š, I'm totally struggling with my diet (as always š) I'm wanting to exchange a couple of meals a day with Atkins protein shakes. I'm "not" going on the Atkins diet or anything, I plan to incorporate fruit and complex carbohydrates in one meal a day and for a snack etc. But, I was just wondering
Ktltel
in
PBC Foundation
5 years ago
Caffeine
I am aged 79. On 31 July my wife took me to Kingston Hospital with chest pains-I felt as if I had been kicked in the chest by a horse! It was 4 pm and A & E was empty. Within minutes I was in the Resuscitation Unit and over the next 5 hours had blood pressure and temperature taken, oximeter reading
I am aged 79. On 31 July my wife took me to Kingston Hospital with chest pains-I felt as if I had been kicked in the chest by a horse! It was 4 pm and A & E was empty. Within minutes I was in the Resuscitation Unit and over the next 5 hours had blood pressure and temperature taken, oximeter reading
Dickyticker26
in
British Heart Foundation
5 years ago
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Does it matter what time of the day I take my medication?
Hi. Iām on urso and ocaliva. I started a year ago for not responding to urso. In the beginning I gradually increased ocaliva dose and had no symptoms. A few months ago I developed the itch people talk about. Nightmare! I now have been taking my ocaliva at night instead of the morning and my itch has
Hi. Iām on urso and ocaliva. I started a year ago for not responding to urso. In the beginning I gradually increased ocaliva dose and had no symptoms. A few months ago I developed the itch people talk about. Nightmare! I now have been taking my ocaliva at night instead of the morning and my itch has
Gilz1702
in
PBC Foundation
5 years ago
Experiences of Ocaliva
Hi everyone, Whatās your experience of being put on Ocaliva? My Gastro is considering putting me on Ocaliva as the Urso doesnāt seem to be working properly. Iāve googled the side effects and it seems to give conflicting advice. One site says reduces itching as fatigue, the other says side effects include
Hi everyone, Whatās your experience of being put on Ocaliva? My Gastro is considering putting me on Ocaliva as the Urso doesnāt seem to be working properly. Iāve googled the side effects and it seems to give conflicting advice. One site says reduces itching as fatigue, the other says side effects include
Hils67
in
PBC Foundation
5 years ago
Nebuliser reaction???
Hi I am as some of you know troubled with copious amounts of mucus, Iāve never gone on nebuliser s much because I found they didnāt help, after a a bad couple of months with infections etc hospital sent me home told me to take carbs 6 a day and nebuliser with saline 4 times a day the 2.5 nebs , well
Hi I am as some of you know troubled with copious amounts of mucus, Iāve never gone on nebuliser s much because I found they didnāt help, after a a bad couple of months with infections etc hospital sent me home told me to take carbs 6 a day and nebuliser with saline 4 times a day the 2.5 nebs , well
carolg1
in
Lung Conditions Community Forum
5 years ago
New to the group but not PBC.
Hi. Iām 57 and was diagnosed with elevated liver enzymes in 2013 while getting routine blood tests at a Planned Parenthood visit. My Dr did not know why. I was not drinking. He wanted to put me on Prednisone and I refused due to the side affects. I went another year trying various liver cleanse and diet
Hi. Iām 57 and was diagnosed with elevated liver enzymes in 2013 while getting routine blood tests at a Planned Parenthood visit. My Dr did not know why. I was not drinking. He wanted to put me on Prednisone and I refused due to the side affects. I went another year trying various liver cleanse and diet
Chulachela
in
PBC Foundation
5 years ago
Sourcing and storage of Saline solutions of Methylcobalamin
I have intermittently come across concerns on this site regarding the supply and thermal/photo stability of saline solutions of methyl cobalamin. Since I wanted to source a saline solution myself I thought the following information would be of general interest. 1. Having been unimpressed by sourcing
I have intermittently come across concerns on this site regarding the supply and thermal/photo stability of saline solutions of methyl cobalamin. Since I wanted to source a saline solution myself I thought the following information would be of general interest. 1. Having been unimpressed by sourcing
Achesandpains75
in
Pernicious Anaemia Society
5 years ago
Anxiety over Neti pot I used
I have anxiety pretty bad during this pregnancy Iām freaking out over me using the Neti pot for my nasal issues I used tap water not knowing because I never used it before so I used the sink tap water but I also used the saline packet it came with an I mixed it in Iām freaked out because I read it causes
I have anxiety pretty bad during this pregnancy Iām freaking out over me using the Neti pot for my nasal issues I used tap water not knowing because I never used it before so I used the sink tap water but I also used the saline packet it came with an I mixed it in Iām freaked out because I read it causes
E2013
in
Anxiety Support
5 years ago
saline solution
I have C.O.P.D and have read that saline solutions help. Does anyone use it and if so how do you go about it. Anything to stop using steroids.
I have C.O.P.D and have read that saline solutions help. Does anyone use it and if so how do you go about it. Anything to stop using steroids.
robotman
in
Lung Conditions Community Forum
5 years ago
Saline nebs when ill
Anyone else here use saline nebs when theyāre ill? They donāt help my bronchi to open up or anything but they make it easier to cough properly. They were recommended to me a few hospital stays back just for when Iāve got a cold or Iām in a flare or something but it occurs to me itās not a common thing
Anyone else here use saline nebs when theyāre ill? They donāt help my bronchi to open up or anything but they make it easier to cough properly. They were recommended to me a few hospital stays back just for when Iāve got a cold or Iām in a flare or something but it occurs to me itās not a common thing
Hidden
in
Asthma Community Forum
6 years ago
Quick update on me, bloodwork
I went off ocaliva last month, staying on urso, at doctors suggestion. My ALP was essentially unchanged from the last test. Iām starting a fibrate this weekend, hoping I will respond to that. Been sick for a couple weeks with strep and such but now feeling great and very optimistic about everything.
I went off ocaliva last month, staying on urso, at doctors suggestion. My ALP was essentially unchanged from the last test. Iām starting a fibrate this weekend, hoping I will respond to that. Been sick for a couple weeks with strep and such but now feeling great and very optimistic about everything.
Ottley3
in
PBC Foundation
6 years ago
New asthma team
I used to be on this forum under a different pseudonym so hi again! My asthma seemed to be going well; until last week, my last attack was ājustā a severe one back in August 2017. Caught it early, out the same night. In March this year, I stepped my Seretide inhaler down from 250/25 (2 puffs twice a
I used to be on this forum under a different pseudonym so hi again! My asthma seemed to be going well; until last week, my last attack was ājustā a severe one back in August 2017. Caught it early, out the same night. In March this year, I stepped my Seretide inhaler down from 250/25 (2 puffs twice a
Hidden
in
Lung Conditions Community Forum
6 years ago
MRE (Magnetic Resonance Elastography) "My Results" So much for trusting Biopsy and Ultrasound. Also... High ferritin may skew MRE score.
Hey friends, My Biopsy 2 years ago said "zero" evidence of PBC. My labs though said I had PBC. I was put on URSO since 2016. Only thing elavated for 2 years has been my Alk-phos. It fluctuated between 157-187 approx. Then Sept./Oct. this year, I felt nauseous and URQP. Labs jumped including AST & ALT
Hey friends, My Biopsy 2 years ago said "zero" evidence of PBC. My labs though said I had PBC. I was put on URSO since 2016. Only thing elavated for 2 years has been my Alk-phos. It fluctuated between 157-187 approx. Then Sept./Oct. this year, I felt nauseous and URQP. Labs jumped including AST & ALT
Ktltel
in
PBC Foundation
6 years ago
Maybe I shouldnāt post OCALIVA side effects. Iām hoping everyone here knows them
MEDICATION GUIDE OCALIVAļ (o-CAL-eh-vah) (obeticholic acid) tablets What is the most important information I should know about OCALIVA? If you have primary biliary cholangitis (PBC) with advanced cirrhosis, you may need a lower dose of OCALIVA. ā¢ Before you start OCALIVA, and during your treatment
MEDICATION GUIDE OCALIVAļ (o-CAL-eh-vah) (obeticholic acid) tablets What is the most important information I should know about OCALIVA? If you have primary biliary cholangitis (PBC) with advanced cirrhosis, you may need a lower dose of OCALIVA. ā¢ Before you start OCALIVA, and during your treatment
SunnyXXOO
in
PBC Foundation
6 years ago
Ocaliva
Hi I have been on Ocaliva for 3 weeks and was wondering if anyone felt that it had caused them any low mood and depression. Really not liking this feeling at all. Thanks
Hi I have been on Ocaliva for 3 weeks and was wondering if anyone felt that it had caused them any low mood and depression. Really not liking this feeling at all. Thanks
Jayne1863
in
PBC Foundation
6 years ago
High ALP and itching
After a year on Urso my ALP is still in the mid-500's (down from mid 700"s). Wondering if the occasional really itchy day is related to the high ALP level? I take 3 prescription meds. for the itch and it is better than a year ago. At my last Dr's appointment he mentioned that we'd discuss adding Ocaliva
After a year on Urso my ALP is still in the mid-500's (down from mid 700"s). Wondering if the occasional really itchy day is related to the high ALP level? I take 3 prescription meds. for the itch and it is better than a year ago. At my last Dr's appointment he mentioned that we'd discuss adding Ocaliva
kp1234
in
PBC Foundation
6 years ago
Non-responders
Hi Just wondered how many of us are considered non-responders and are in the slightly over upper end of normal to around the 200 range of Alkaline Phosphatase who have stayed on Ursodiol only. How long have you been in this range? Have your symptoms advanced? I am also AMA-negative. I was diagnosed
Hi Just wondered how many of us are considered non-responders and are in the slightly over upper end of normal to around the 200 range of Alkaline Phosphatase who have stayed on Ursodiol only. How long have you been in this range? Have your symptoms advanced? I am also AMA-negative. I was diagnosed
Twojer
in
PBC Foundation
6 years ago
I'm venting...... š
Hi everyone, I'm gonna apologize right now cause I'm venting. š£ You don't have to read it. And thank you to the ones who stick it out. I'm sure my story is a familiar one. Being accurately staged? Is this something that can be done? I read about so many of us who have been told one thing by our doctors
Hi everyone, I'm gonna apologize right now cause I'm venting. š£ You don't have to read it. And thank you to the ones who stick it out. I'm sure my story is a familiar one. Being accurately staged? Is this something that can be done? I read about so many of us who have been told one thing by our doctors
Ktltel
in
PBC Foundation
6 years ago
Feeling like I want to scream and have a proper tantrum
I rarely post a message but feel part of the community here, I have learnt lots and understand so much more than I did 6 years ago, that is due to all you wonderful people living with this difficult disease sharing yourselves - thank you I am so frustrated right now, I have been seeing a rheumy consult
I rarely post a message but feel part of the community here, I have learnt lots and understand so much more than I did 6 years ago, that is due to all you wonderful people living with this difficult disease sharing yourselves - thank you I am so frustrated right now, I have been seeing a rheumy consult
Anjic
in
LUPUS UK
6 years ago
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