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Intrinsic factor
I seem to be at a sticking point with the findings of the intrinsic factor test. This is due to the way they now interpret the test results. My test result was Au/ml 1.63 ... Which I jumped with joy over as I thought "at last, this proves I have been telling the truth". How wrong I was. It is no longer
I seem to be at a sticking point with the findings of the intrinsic factor test. This is due to the way they now interpret the test results. My test result was Au/ml 1.63 ... Which I jumped with joy over as I thought "at last, this proves I have been telling the truth". How wrong I was. It is no longer
Allywales8663
in
Pernicious Anaemia Society
12 days ago
ANA test results
Hi, I’m reaching out in the hope someone is able to help me translate my ANA blood tests. I’ve had symptoms for over a year, predominantly fatigue/exhaustion, painful joints, mouth sores, feet that turn purple when cold (I also have a coeliac disease diagnosis from 2015). My results are back on
Hi, I’m reaching out in the hope someone is able to help me translate my ANA blood tests. I’ve had symptoms for over a year, predominantly fatigue/exhaustion, painful joints, mouth sores, feet that turn purple when cold (I also have a coeliac disease diagnosis from 2015). My results are back on
PurpleKoala24
in
LUPUS UK
13 days ago
Wednesday's Word
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
[u][i]
Urso responder........
[/i][/u] Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal. I know this can be very confusing. This is why
DonnaBoll
Administrator
in
PBC Foundation
16 days ago
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unknown rash
hi everyone! Last week I posted pictures of my son’s face rash asking if it looked like cutaneous lupus. For those who are just reading now, he had this rash for about two months now— started on his ear which was raw red then went away. A few weeks later the rash developed bright red spots on his face
hi everyone! Last week I posted pictures of my son’s face rash asking if it looked like cutaneous lupus. For those who are just reading now, he had this rash for about two months now— started on his ear which was raw red then went away. A few weeks later the rash developed bright red spots on his face
Demaso33
in
LUPUS UK
21 days ago
unknown face rash
hi— My five-year-old son has had a rash on his face for over a month now. The rash initially started on his ear but resolved,, however the face stayed the same. We’ve taken him to his pediatrician emergency room and dermatologist and nobody knows what it is. Right after the spots started to appear he
hi— My five-year-old son has had a rash on his face for over a month now. The rash initially started on his ear but resolved,, however the face stayed the same. We’ve taken him to his pediatrician emergency room and dermatologist and nobody knows what it is. Right after the spots started to appear he
Demaso33
in
LUPUS UK
28 days ago
Why would my Alk Phos go up after just starting urso?
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Hi All, I have a question and wondered if anyone had an answer to if they had a similar experience. I just started taking Urso and have been on it now close to a month my recent blood work shows that my Alk Phos has increased rather than decreased. While I know it may take awhile for Urso to potentially
Toddyboo
in
PBC Foundation
2 months ago
Help I don’t understand
So for the last 4 months I’ve been having pain in my muscles and head as well as tingling and a burning sensation. Also extreme fatigue and a red rash on my cheeks and trouble swallowing.My doctor gave me prednisone to treat because crp and esr were high. She also started me on plaquenil. Now before
So for the last 4 months I’ve been having pain in my muscles and head as well as tingling and a burning sensation. Also extreme fatigue and a red rash on my cheeks and trouble swallowing.My doctor gave me prednisone to treat because crp and esr were high. She also started me on plaquenil. Now before
Jadaboo4
in
LUPUS UK
2 months ago
another pharma update
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
milk thistle
has anyone taken milk thistle and alk phos or lft improve? are they any vitamins or supplements that have have been known to help PBC test results? thanks!
has anyone taken milk thistle and alk phos or lft improve? are they any vitamins or supplements that have have been known to help PBC test results? thanks!
Samanthaann
in
PBC Foundation
2 months ago
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
A suggestion that is working well, for me at least. AT least for now.
I think RLS can have several triggers, as well as several things that help. Sometimes it changes and what worked often does not neccessarily work each time. It may work again, but in the meantime, you need something else. Certainly avoiding foods or substances that bother and trigger the RLS, is a
I think RLS can have several triggers, as well as several things that help. Sometimes it changes and what worked often does not neccessarily work each time. It may work again, but in the meantime, you need something else. Certainly avoiding foods or substances that bother and trigger the RLS, is a
lauraflora
in
Restless Legs Syndrome
5 months ago
Does anyone with LUPUS get reoccurring Shingles/ Herpes Zoster infections?
So I am waiting to be diagnosed with Lupus/ Mix Connective Tissue Disease. I have a lot of the symptoms for lupus like the face rash, other rashes on my body. Severing from fatigue, mouth ulcers really bad migraines. My body gets swollen and holds a lot of fluid. Joint pain as well as stomach issues.
So I am waiting to be diagnosed with Lupus/ Mix Connective Tissue Disease. I have a lot of the symptoms for lupus like the face rash, other rashes on my body. Severing from fatigue, mouth ulcers really bad migraines. My body gets swollen and holds a lot of fluid. Joint pain as well as stomach issues.
Severancered9
in
LUPUS UK
2 months ago
Need Help With Results From Blood Test
Hello everyone, I recently started having burning sensations, tingling and pain in my head, leg, feet and arms, also brain fog, dry mouth, and muscle pain in chest with extreme fatigue. Also had a red rash under both of my eyes.My GP ordered blood work and my platelets were high, iron low, protein and
Hello everyone, I recently started having burning sensations, tingling and pain in my head, leg, feet and arms, also brain fog, dry mouth, and muscle pain in chest with extreme fatigue. Also had a red rash under both of my eyes.My GP ordered blood work and my platelets were high, iron low, protein and
Jadaboo4
in
LUPUS UK
2 months ago
Adenomyosis, Endometriosis and Autoimmune diseases
Hi ladies, this question is just out of curiosity because I see several posts about a lot of us having a combination of Endometriosis/ Adenomyosis and autoimmune disease. Following all my symptoms (that got even worse since I have no therapy but only medication to ease the pain) now I got a possible
Hi ladies, this question is just out of curiosity because I see several posts about a lot of us having a combination of Endometriosis/ Adenomyosis and autoimmune disease. Following all my symptoms (that got even worse since I have no therapy but only medication to ease the pain) now I got a possible
Taikaei
in
Endometriosis UK
2 months ago
Perplexed over lab work
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
aybaylay
in
Pernicious Anaemia Society
2 months ago
Figuring things out - first year since diagnosis
Hi, I'm posting here as I don't know anyone in real life with lupus and have been struggling to work out what my expectations should be in terms of symptoms. I was diagnosed just over a year ago following about a year of strange symptoms - GI issues, weight loss, Raynaud's, mouth ulcers, hand and wrist
Hi, I'm posting here as I don't know anyone in real life with lupus and have been struggling to work out what my expectations should be in terms of symptoms. I was diagnosed just over a year ago following about a year of strange symptoms - GI issues, weight loss, Raynaud's, mouth ulcers, hand and wrist
CGSLE
in
LUPUS UK
3 months ago
Lupus or another Autoimmune Disease?
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
Milescircus
in
LUPUS UK
3 months ago
blood tests
hi lovely people, I was wondering if you could give me any advice. I’m relatively new to all of this and I’ve had a very bad experience at my last hospital. I was misdiagnosed most of last year with Complex Regional Pain disease. My rheumatologist wouldn’t even consider an autoimmune disease. Anyway
hi lovely people, I was wondering if you could give me any advice. I’m relatively new to all of this and I’ve had a very bad experience at my last hospital. I was misdiagnosed most of last year with Complex Regional Pain disease. My rheumatologist wouldn’t even consider an autoimmune disease. Anyway
Tonkie
in
LUPUS UK
3 months ago
Good report
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP). Now just to make myself committed to making
DonnaBoll
Administrator
in
PBC Foundation
3 months ago
I have my GP appt to discuss getting a diagnosis..... But do I ask for ANA tedt or referral to specialist???
Hi all, you were all so helpful when i first posted at the beginning of Feb! Finally the day is so close to discuss my possible lupus diagnosis (weds). I have took advice from your chats ,and written my symptoms down since start of Feb,and I'm ready to hopefully try to find a way forwards! But I guess
Hi all, you were all so helpful when i first posted at the beginning of Feb! Finally the day is so close to discuss my possible lupus diagnosis (weds). I have took advice from your chats ,and written my symptoms down since start of Feb,and I'm ready to hopefully try to find a way forwards! But I guess
Gingernat20
in
LUPUS UK
3 months ago
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