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Crawling feeling on right side of my head
Sometimes I have this feeling that something is crawling under my skin on my head. Same spot and don’t know what triggers it. I have stage one PBC since 2011. I am on Urso and OCaliva. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
Sometimes I have this feeling that something is crawling under my skin on my head. Same spot and don’t know what triggers it. I have stage one PBC since 2011. I am on Urso and OCaliva. My itch and fatigue are in control but Since last year I got this creepy thing. Has anyone experienced this?
Mg40
in
PBC Foundation
6 years ago
Any connection between dairy and itching?
Was reading a few of the itching posts. I wanted to share that i had added dairy into my diet in march, and my symptoms got worse - very itchy. I went off of it in June and the itching has gotten much better. This could all be in my head - or maybe it is indeed the dairy! Sharing in case this helps someone
Was reading a few of the itching posts. I wanted to share that i had added dairy into my diet in march, and my symptoms got worse - very itchy. I went off of it in June and the itching has gotten much better. This could all be in my head - or maybe it is indeed the dairy! Sharing in case this helps someone
Ottley3
in
PBC Foundation
6 years ago
Urso and itching
Hi everyone. I have a quick question. Was anyone’s itching still bad even after taking Urso? My doctor thinks because I’m on Urso and my numbers are going down I should not be itching anymore. It is worse than ever but she won’t beleive me. Thanks
Hi everyone. I have a quick question. Was anyone’s itching still bad even after taking Urso? My doctor thinks because I’m on Urso and my numbers are going down I should not be itching anymore. It is worse than ever but she won’t beleive me. Thanks
Rottiemommy
in
PBC Foundation
6 years ago
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positive AMA and ANA for 4 years normal Lifts what to do?
Hello I am new here was wondering if anyone has similar experience I am 37 years old female, have positive ANA and AMA since 2014, picked up by a random test, since them i have been doing regular screening all my Lifts is in the normal range , never elevated, GGT normal, i have been tested for all the
Hello I am new here was wondering if anyone has similar experience I am 37 years old female, have positive ANA and AMA since 2014, picked up by a random test, since them i have been doing regular screening all my Lifts is in the normal range , never elevated, GGT normal, i have been tested for all the
Tatianau
in
PBC Foundation
6 years ago
Trying to loose weight
Trying to loose weight. On Urso for PBC which is know to make you put on weight. Trying to find the right calories to eat to loose the weight. Have a BMI of 32 but can’t have anywhere near what they suggested which is 1450 and 1876 calories. Any suggestions.
Trying to loose weight. On Urso for PBC which is know to make you put on weight. Trying to find the right calories to eat to loose the weight. Have a BMI of 32 but can’t have anywhere near what they suggested which is 1450 and 1876 calories. Any suggestions.
MrsPearson
in
Healthy Eating
6 years ago
PBC and Itch
Hello! If you believe that your itch is caused by PBC or taking Urso, can you describe, what sort of itch is it? I'm experiencing itching and burning around my neck. I can clearly see red marks on my neck, where it itches. It looks like a release of histamine under the skin. I wonder, if the itch that
Hello! If you believe that your itch is caused by PBC or taking Urso, can you describe, what sort of itch is it? I'm experiencing itching and burning around my neck. I can clearly see red marks on my neck, where it itches. It looks like a release of histamine under the skin. I wonder, if the itch that
iagra
in
PBC Foundation
6 years ago
Blood Donation
Hello, does anyone know if you can donate blood if you have PBC and are taking Urso? It’s not on the list of conditions / medications listed on the NHS site. I have quite a rare blood group, and apparently stocks are low in London so would like to donate if I can.
Hello, does anyone know if you can donate blood if you have PBC and are taking Urso? It’s not on the list of conditions / medications listed on the NHS site. I have quite a rare blood group, and apparently stocks are low in London so would like to donate if I can.
Suzielbeau
in
PBC Foundation
6 years ago
Ocaliva, dosage, elevated cholesterol
Hi, diagnosed with pbc 3/17, started on urso 4/17, improvement flattened 9/17, started ocaliva 5mg 11/17. Saw immediate improvement but now my liver function tests climbing especially ALP at 335. considering moving up to 10 mg ocaliva but my cholesterol is already elevated from the ocaliva and I’m concerned
Hi, diagnosed with pbc 3/17, started on urso 4/17, improvement flattened 9/17, started ocaliva 5mg 11/17. Saw immediate improvement but now my liver function tests climbing especially ALP at 335. considering moving up to 10 mg ocaliva but my cholesterol is already elevated from the ocaliva and I’m concerned
Ottley3
in
PBC Foundation
6 years ago
Non -responder to ursodeoxycholic acid
Hi everyone So I saw my consultant on 18th June and he told me I’m not responding to urso !!! He said I fit the criteria for oclavia but would need to take this to an MDT meeting first, I’m currently off sick and have had a melt down, I have been taking urso for a year, and completely changed my lifestyle
Hi everyone So I saw my consultant on 18th June and he told me I’m not responding to urso !!! He said I fit the criteria for oclavia but would need to take this to an MDT meeting first, I’m currently off sick and have had a melt down, I have been taking urso for a year, and completely changed my lifestyle
Rozm2004
in
PBC Foundation
6 years ago
I've just been diagnosed with PBC - in last four months I've been taking urso 2x a day now I'm taking 2x250mg at bedtime- anyone like this?
Just wondered as i thought taking it at bedtime was for disolving gall stones. I didn't know about at change to the prescription until the pharmacist explained.
Just wondered as i thought taking it at bedtime was for disolving gall stones. I didn't know about at change to the prescription until the pharmacist explained.
Bbbbbbbbbmmmm
in
PBC Foundation
6 years ago
Update:
Well, the Urso hasn’t worked like before, so my doctor has added Ocaliva to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper. It’s crazy, I know...so when I told my doctor
Well, the Urso hasn’t worked like before, so my doctor has added Ocaliva to my list of medication. I started taking it once a day and had the itching side effect. So, instead of wanting to literally peel off the first layer of skin, I wanted to go deeper. It’s crazy, I know...so when I told my doctor
Pamela372
in
PBCers Organization
6 years ago
Cost of Ocaliva in the US.
Diagnosed last year with PBC. ALP was 755 and after a year on Urso only down to 540; been checked 3 times since diagnosis. Dr. is talking about adding Ocaliva. His words were "I don't want to bankrupt you but..." I have health insurance (medicare and supplemental insurance) but am still concerned
Diagnosed last year with PBC. ALP was 755 and after a year on Urso only down to 540; been checked 3 times since diagnosis. Dr. is talking about adding Ocaliva. His words were "I don't want to bankrupt you but..." I have health insurance (medicare and supplemental insurance) but am still concerned
kp1234
in
PBC Foundation
6 years ago
Vitamin D3 and Urso
Hi All, is it ok to take vitamin D3 and one of the 3 Urso capsules at the same time with food? I take synthroid on an empty stomach when I wake up wait an hour have coffee and breakfast and this would be the time I would like to take these two meds. What say you? Ellyne
Hi All, is it ok to take vitamin D3 and one of the 3 Urso capsules at the same time with food? I take synthroid on an empty stomach when I wake up wait an hour have coffee and breakfast and this would be the time I would like to take these two meds. What say you? Ellyne
Ellyne
in
PBC Foundation
6 years ago
Age and Urso dosage if your over 70 does the dosage stay the same.
Has anyone had docter say the dosage should be less if your over 70
Has anyone had docter say the dosage should be less if your over 70
summer641946
in
PBC Foundation
6 years ago
Gastro/Hep Specialist Makes me More Baffled
Hi, This weekend I went to a specialist in sunny San Diego. He is said to be an excellent doctor and knowledgeable with PBC. I went for a second opinion as to whether I have PBC or not? His response was in some ways informative, but left me more puzzled than ever and sad. The only marker I have at
Hi, This weekend I went to a specialist in sunny San Diego. He is said to be an excellent doctor and knowledgeable with PBC. I went for a second opinion as to whether I have PBC or not? His response was in some ways informative, but left me more puzzled than ever and sad. The only marker I have at
Sdone
in
PBC Foundation
6 years ago
Test Results
Just got my test results for Liver Panel and AST and ALT have significantly reduced and I am in the low end of the reference range. I am delirious with happiness. Urso is working!!! Thanks for all the help and advise I received here. Ellyne
Just got my test results for Liver Panel and AST and ALT have significantly reduced and I am in the low end of the reference range. I am delirious with happiness. Urso is working!!! Thanks for all the help and advise I received here. Ellyne
Ellyne
in
PBC Foundation
6 years ago
Reversal of fortune in bloodwork but staying positive
Diagnosed in 3/2017 from a blood test. No symptoms just elevated enzymes. I started Urso and was a partial responder -biopsy confirmed stage 1pbc in September. Started ocaliva in November - strong improvement in enzymes initially then more gradual- bloodwork 3/28/18 had ALP 188 (down from high 300s
Diagnosed in 3/2017 from a blood test. No symptoms just elevated enzymes. I started Urso and was a partial responder -biopsy confirmed stage 1pbc in September. Started ocaliva in November - strong improvement in enzymes initially then more gradual- bloodwork 3/28/18 had ALP 188 (down from high 300s
Ottley3
in
PBC Foundation
6 years ago
Sudden Drastic Change in AST and ALT
As of the beginning of 2018 I had the ALP, AST and ALT somewhat stabilized and under control with Urso. The ALP (normal 33-130) was running in the 300’s, but that was a far cry from the 750 it started out at when diagnosed 2 yrs ago. The AST (normal 10-35) has been within “Normal” range, but was in the
As of the beginning of 2018 I had the ALP, AST and ALT somewhat stabilized and under control with Urso. The ALP (normal 33-130) was running in the 300’s, but that was a far cry from the 750 it started out at when diagnosed 2 yrs ago. The AST (normal 10-35) has been within “Normal” range, but was in the
GhostHunter
in
PBC Foundation
6 years ago
15 yrs with pbc
I was diagnosed when I turned thirty. Seen drs every 6 months allergic to urso allergic to many many medications. I’m stage at stage 3 as of now. Fell down in 2015 broke my knee and injured my back had sergury then got staph infection started having stumache issues told antibiotics eat got bacteria leaving
I was diagnosed when I turned thirty. Seen drs every 6 months allergic to urso allergic to many many medications. I’m stage at stage 3 as of now. Fell down in 2015 broke my knee and injured my back had sergury then got staph infection started having stumache issues told antibiotics eat got bacteria leaving
Teri8672
in
PBC Foundation
6 years ago
Turmeric
Hi Diagnosed with PSC 2 years ago aged 68 after years of UC put on Urso but it gives me Back pain and AcidReflux stopped using and Blood liver test were high consultant suggested I go back on them and it liver bloods were better Question apparently Turmeric is good forLiver and Joint Pain so been
Hi Diagnosed with PSC 2 years ago aged 68 after years of UC put on Urso but it gives me Back pain and AcidReflux stopped using and Blood liver test were high consultant suggested I go back on them and it liver bloods were better Question apparently Turmeric is good forLiver and Joint Pain so been
Roccadave
in
PBC Foundation
6 years ago
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