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trying to get a diagnoses
Hello, I was wondering if anyone can offer any advice or support. For years now Iv been having body pains being exhausted to the point I would fall asleep sat up. Not being able to do normal day to day things some days. . I got diagnosed with vit d deficiency I’m on tablets everyday for this for
Hello, I was wondering if anyone can offer any advice or support. For years now Iv been having body pains being exhausted to the point I would fall asleep sat up. Not being able to do normal day to day things some days. . I got diagnosed with vit d deficiency I’m on tablets everyday for this for
Rubydax
in
LUPUS UK
3 days ago
Potential Lupus diagnosis
Hello, I have just joined this site and would be very grateful for any advice given. Sorry this might be a bit long winded🤪 So… my ethnicity is of Asian origin and ever since I can remember I don’t think a day has gone by where I don’t suffer from joint aches , muscle pain body stiffness and chronic
Hello, I have just joined this site and would be very grateful for any advice given. Sorry this might be a bit long winded🤪 So… my ethnicity is of Asian origin and ever since I can remember I don’t think a day has gone by where I don’t suffer from joint aches , muscle pain body stiffness and chronic
Perfumeflower57
in
LUPUS UK
6 days ago
just diagnosed with lupus
hi I’ve just been diagnosed with lupus via positive ANA test ! Only symptoms are the sun burning my neck and chest and my glands swell !! No medication given at the moment as I don’t have any other symptoms? Is there medication for this sun allergy ??? Thank you for any help !!!
hi I’ve just been diagnosed with lupus via positive ANA test ! Only symptoms are the sun burning my neck and chest and my glands swell !! No medication given at the moment as I don’t have any other symptoms? Is there medication for this sun allergy ??? Thank you for any help !!!
Edm174
in
LUPUS UK
9 days ago
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I am lost, should I seek a second opinion?
hi, this will be a bit of a long one sorry. I am really confused and don’t know whether to accept my gps answer or go private for a second opinion. My issues started more noticeably in October last year when I started heavily bleeding and having long periods and very short periods of time of not bleeding
hi, this will be a bit of a long one sorry. I am really confused and don’t know whether to accept my gps answer or go private for a second opinion. My issues started more noticeably in October last year when I started heavily bleeding and having long periods and very short periods of time of not bleeding
Han99m
in
Thyroid UK
15 days ago
Don't know where to start
After 4 years I still don't really know what I have.Initially diagnosed with Undifferentiated Inflammatory Arthritis, then discovered by accident that it had changed to Connective Tissue Disease and Lupus. I also discovered only yesterday that at some point I tested positive for ANA which I've never
After 4 years I still don't really know what I have.Initially diagnosed with Undifferentiated Inflammatory Arthritis, then discovered by accident that it had changed to Connective Tissue Disease and Lupus. I also discovered only yesterday that at some point I tested positive for ANA which I've never
Brychni
in
LUPUS UK
18 days ago
I’ll health retirement
Hi All I posted on here a couple of months back about I’ll health retirement with the NHS pension I got a letter back today saying I don’t qualify for tier one or two reason being there is still ongoing issues not resolved I was diagnosed with Fibro in 2022 and mainly bedbound most days I was
Hi All I posted on here a couple of months back about I’ll health retirement with the NHS pension I got a letter back today saying I don’t qualify for tier one or two reason being there is still ongoing issues not resolved I was diagnosed with Fibro in 2022 and mainly bedbound most days I was
10x10
in
Fibromyalgia Action UK
19 days ago
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
1 month 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
1 month 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
1 month ago
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
2 months 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
2 months 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
3 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
3 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
3 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
3 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
3 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
3 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
3 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
3 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
3 months ago
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