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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
4 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
4 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
4 months ago
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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
4 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
4 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
4 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
4 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
5 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
5 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
5 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
5 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
7 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
5 months ago
Requesting advise for chronic inflammation and iron deficiency anemia
My wife is having a nagging health issue that is still unidentified, only visible thing is I have chronic inflammation and iron deficiency anemia but my other tests are normal like Ana test, HPLC TEST, LDH, LFT, KFT, cholesterol, thyroid, hba1c and fasting blood suger everything is normal only lower
My wife is having a nagging health issue that is still unidentified, only visible thing is I have chronic inflammation and iron deficiency anemia but my other tests are normal like Ana test, HPLC TEST, LDH, LFT, KFT, cholesterol, thyroid, hba1c and fasting blood suger everything is normal only lower
Orco
in
Women's Health
6 months ago
Curious about PBC symptoms and LFTs at Diagnosis
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Hello Everyone, I am new to the group and I was recently diagnosed with PBC and I was wondering if anyone could share what symptoms they might have been experiencing when they first were diagnosed with PBC. I know from doing some research, that "intense" itching is mentioned as well as elevated LFTs
Toddyboo
in
PBCers Organization
6 months ago
Not believed
I was sent to Rheumatology last year as my hand keeps swelling and I can’t bend my fingers. This was after many years of other issues but I never put the puzzle together and thought I could have been suffering with an autoimmune disease. I have suffered with Angioedema since 2017, with my face blowing
I was sent to Rheumatology last year as my hand keeps swelling and I can’t bend my fingers. This was after many years of other issues but I never put the puzzle together and thought I could have been suffering with an autoimmune disease. I have suffered with Angioedema since 2017, with my face blowing
Tonkie
in
NRAS
6 months ago
facial rash
hi there, I have just had a positive ana result and suspected lupus so I am being referred to a rheumatologist. I have a slight red rash on both cheeks but nothing on my nose. Can a lupus facial rash be just mildly on both cheeks and not on your nose? thanks in advance for any replies? Pinkyerin
hi there, I have just had a positive ana result and suspected lupus so I am being referred to a rheumatologist. I have a slight red rash on both cheeks but nothing on my nose. Can a lupus facial rash be just mildly on both cheeks and not on your nose? thanks in advance for any replies? Pinkyerin
Pinkyerin
in
LUPUS UK
6 months ago
New Diagnosis of PBC and Prescribed URSO
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Toddyboo
in
PBC Foundation
6 months ago
Watching House
I am off on a long weekend (tomorrow I go back to work), and watching House on Netflix. Funny how they focus on positive ANA for lupus on this. Of course it is never lupus, but the irony is, when you don’t tests positive on ANA - it can’t be lupus. BUT, if people test positive for ANA, you are told
I am off on a long weekend (tomorrow I go back to work), and watching House on Netflix. Funny how they focus on positive ANA for lupus on this. Of course it is never lupus, but the irony is, when you don’t tests positive on ANA - it can’t be lupus. BUT, if people test positive for ANA, you are told
Willow7733
in
LUPUS UK
6 months ago
Positive ANA and Symptoms
Hi everyoneI first tested positive for ANA (high) back in 2014 think it was 1:1280 This was never really followed up & I didn't understand it as I was only young then, but in thr last 5 years I've been experiencing symptoms. I have had more blood tests just from a GP who said ANA aas positive and explained
Hi everyoneI first tested positive for ANA (high) back in 2014 think it was 1:1280 This was never really followed up & I didn't understand it as I was only young then, but in thr last 5 years I've been experiencing symptoms. I have had more blood tests just from a GP who said ANA aas positive and explained
JCM1992
in
LUPUS UK
6 months ago
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