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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
4 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
4 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
4 months ago
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Bloods
Can anyone explain what these mean pleaseFull blood count Rouleaux + Lymphocytosis persists FILM REFERRED TO CONSULTANT HAEMATOLOGIST note raised esr and leukocytosis? underlying cause
Can anyone explain what these mean pleaseFull blood count Rouleaux + Lymphocytosis persists FILM REFERRED TO CONSULTANT HAEMATOLOGIST note raised esr and leukocytosis? underlying cause
pettyt65
in
Thyroid UK
1 year ago
Stronger sense of taste on Urso
Has anyone here noticed a stronger sense of taste whilst taking Urso? Specifically sweet and salty tastes seem much stronger since I have been taking them.
Has anyone here noticed a stronger sense of taste whilst taking Urso? Specifically sweet and salty tastes seem much stronger since I have been taking them.
MSJT
in
PBC Foundation
7 months ago
My reaction to Crestor & Nubeqa combo. I need to make some adjustments. This study says simvastatin is best against APC. Your thoughts?
Based on these studies, do you think it's best to use simvastatin as your choice of statins? I'm using Crestor 5 mg plus 5mg Zetia and my ldl has gone down to a level, which puts me at risk of infection. Plus, my brain isnt functioning nearly as well as it used to. My current ldl is 27. This probably
Based on these studies, do you think it's best to use simvastatin as your choice of statins? I'm using Crestor 5 mg plus 5mg Zetia and my ldl has gone down to a level, which puts me at risk of infection. Plus, my brain isnt functioning nearly as well as it used to. My current ldl is 27. This probably
GeorgeGlass
in
Fight Prostate Cancer
1 year 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
4 months ago
weird mouth symptoms on Sulfasalazine
Has anyone experienced anything like the following? I’ve been on Sulf for 7 weeks, max dose from 4 weeks. In the last 3 days I’ve had a sore tongue which has now settled but I’ve completely lost my sense of taste. I’ve tested and am negative for covid. I can’t think what else it could be!
Has anyone experienced anything like the following? I’ve been on Sulf for 7 weeks, max dose from 4 weeks. In the last 3 days I’ve had a sore tongue which has now settled but I’ve completely lost my sense of taste. I’ve tested and am negative for covid. I can’t think what else it could be!
Charlongo79
in
NRAS
7 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
5 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
5 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
5 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
5 months ago
Requesting Help to Develop Bespoke BAT
Brief history. Diagnosed in July 2020 with oligometastatic PC with PSA 1,600… picked at 13,000+ after biopsy, Gleason 8. One previous bone femur lesion ( succesfuly treated by SBRT and 3 pelvic lymphodes (succesfuly treated by Lu-177). Discordance and previous existence of FDG+/PSMA- lesions. Volume
Brief history. Diagnosed in July 2020 with oligometastatic PC with PSA 1,600… picked at 13,000+ after biopsy, Gleason 8. One previous bone femur lesion ( succesfuly treated by SBRT and 3 pelvic lymphodes (succesfuly treated by Lu-177). Discordance and previous existence of FDG+/PSMA- lesions. Volume
CurrentSEO
in
Fight Prostate Cancer
1 year 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
5 months ago
Terrys nails
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
FarahS
in
PBC Foundation
5 months ago
Warm sensation in anus
After some bowel movements I'll feel a warm sensation afterwards in the anus. No diarrhea, no straining, no hemorrhoids, no bleeding. Just a warmth in the anus and feels like it isn't relaxing perhaps Anyone else have this? What causes it?
After some bowel movements I'll feel a warm sensation afterwards in the anus. No diarrhea, no straining, no hemorrhoids, no bleeding. Just a warmth in the anus and feels like it isn't relaxing perhaps Anyone else have this? What causes it?
Catsandsunsets
in
IBS Network
9 months ago
Does this look like a malar rash? Would it be seen as one by a doctor, do you think?
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
Fluffymella
in
LUPUS UK
5 months ago
Private specialist recommendation?
I’m not sure if this is allowed? I’m looking for a private Lupus specialist in the Gloucestershire / Wales area. Is there anyone that can be recommended? Despite positive ANA & ANCA my gp says she won’t refer me because other tests were ok and I saw one a few years ago that diagnosed fibromyalgia. Most
I’m not sure if this is allowed? I’m looking for a private Lupus specialist in the Gloucestershire / Wales area. Is there anyone that can be recommended? Despite positive ANA & ANCA my gp says she won’t refer me because other tests were ok and I saw one a few years ago that diagnosed fibromyalgia. Most
Puckster01
in
LUPUS UK
5 months ago
ulcers and inflammed gums
Hey guys I’m having a flare , I have bleeding gums that are inflame and ulcers all on the roof of my mouth and all inside my mouth , it’s so painful can anyone suggest anything that could help ?
Hey guys I’m having a flare , I have bleeding gums that are inflame and ulcers all on the roof of my mouth and all inside my mouth , it’s so painful can anyone suggest anything that could help ?
Tigerlilly20
in
LUPUS UK
8 months ago
Royal Free visit
Hi all, I just thought I would give a quick update. I attended the Royal Free Hospital last Thursday ,I was seen in the Scleroderma clinic by a member of the team. She asked questions and examined me, she then went and got a senior colleague,(not Prof Denton) unfortunately can’t remember their names
Hi all, I just thought I would give a quick update. I attended the Royal Free Hospital last Thursday ,I was seen in the Scleroderma clinic by a member of the team. She asked questions and examined me, she then went and got a senior colleague,(not Prof Denton) unfortunately can’t remember their names
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
6 months ago
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