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newbie
hello there, I’m Steve. I have been living with auto immune liver disease for 20+ years now and I was recommended to join by a social prescriber at my local doctors surgery today! I’m just looking for support from people with autoimmune hepatitis and other liver conditions, who have found it difficult
hello there, I’m Steve. I have been living with auto immune liver disease for 20+ years now and I was recommended to join by a social prescriber at my local doctors surgery today! I’m just looking for support from people with autoimmune hepatitis and other liver conditions, who have found it difficult
Northernsouthener31
in
British Liver Trust
3 months ago
Hydroxychloroquine toxic retinopathy
Hi. I have had Lupus for 22 years and been on Hydroxychloroquine 400mg daily since then plus 2mg Prednisolone. Recent eye tests have shown that the Hydroxy is affecting the retina. I was warned at the outset, that it can affect eyes, but it still a bit of a shock. Opthamology Consultant says I must
Hi. I have had Lupus for 22 years and been on Hydroxychloroquine 400mg daily since then plus 2mg Prednisolone. Recent eye tests have shown that the Hydroxy is affecting the retina. I was warned at the outset, that it can affect eyes, but it still a bit of a shock. Opthamology Consultant says I must
Juniperm
in
LUPUS UK
3 months ago
Paul's last day today
Today is Paul Howard's last day at LUPUS UK after 13 years at the charity. Please join us in sending him our very best wishes for the future. Thank you for everything you have done for the lupus community. You will be very much missed!
Today is Paul Howard's last day at LUPUS UK after 13 years at the charity. Please join us in sending him our very best wishes for the future. Thank you for everything you have done for the lupus community. You will be very much missed!
Debbie_kinsey
Administrator
in
LUPUS UK
3 months ago
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Plant-based raw food diet eases symptoms of SLE, Sjögren’s: Report
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
3 months ago
Just saying hello
Good morning. I have just joined and wanted to say hello and let you all know how appreciative I am that there is a forum for kidney transplant recipients.
Good morning. I have just joined and wanted to say hello and let you all know how appreciative I am that there is a forum for kidney transplant recipients.
4Evergrateful2God
in
Kidney Transplant
9 months ago
constantly have infection
hello team, I have CLL for 10 years After I started Imbruvica for the last 4 years started to have UTI or oral infection. The last time during the last 2 months have 4 times infections. Constantly on Antibiotics which is very bad. I would like to talk to my doctor Daya from NYU if I should switch
hello team, I have CLL for 10 years After I started Imbruvica for the last 4 years started to have UTI or oral infection. The last time during the last 2 months have 4 times infections. Constantly on Antibiotics which is very bad. I would like to talk to my doctor Daya from NYU if I should switch
farber
in
CLL Support
1 year ago
Getting tested after taking any supplements...
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Suffering_sunny
in
Pernicious Anaemia Society
3 months ago
HRT and B12
So I went to see an actual Doctor, having been diagnosed with PA by the nurses last summer, with a B12 level of 143.His opening gambit, having looked at the September blood results, serum vitamin B12 = 496, was "You do not have Pernicious Anemia!" Stupid me hadn't SId for 4 days, because I wanted the
So I went to see an actual Doctor, having been diagnosed with PA by the nurses last summer, with a B12 level of 143.His opening gambit, having looked at the September blood results, serum vitamin B12 = 496, was "You do not have Pernicious Anemia!" Stupid me hadn't SId for 4 days, because I wanted the
Oneash
in
Pernicious Anaemia Society
3 months ago
Give your feedback to help us update our "Lupus: A Guide to Pregnancy" booklet
We're updating our "Guide to Pregnancy" booklet with the new medication guidelines, and we want to hear from you about what else we should include or think about to make sure a new version meets the needs of the lupus community. Complete our anonymous survey here: https://forms.gle/iPBShZxtoJdKaEsn7
We're updating our "Guide to Pregnancy" booklet with the new medication guidelines, and we want to hear from you about what else we should include or think about to make sure a new version meets the needs of the lupus community. Complete our anonymous survey here: https://forms.gle/iPBShZxtoJdKaEsn7
Debbie_kinsey
Administrator
in
LUPUS UK
3 months ago
Unstable Thyroid Function
For over 20 years my underactive thyroid function was stable -taking 125mg of levothyroxine daily. Last Summer it went haywire and became overactive. Medication was reduced to 100mg and by November it was stable. Now,the results of my requested blood test show it's underactive again and my medication
For over 20 years my underactive thyroid function was stable -taking 125mg of levothyroxine daily. Last Summer it went haywire and became overactive. Medication was reduced to 100mg and by November it was stable. Now,the results of my requested blood test show it's underactive again and my medication
doonicle
in
Thyroid UK
3 months ago
Raynaud's in nipples?
I've posted this in Lupus and the Raynaud's & Scleroderma groups, and no responses. Surely I can't be the only one?
I've posted this in Lupus and the Raynaud's & Scleroderma groups, and no responses. Surely I can't be the only one?
Brychni
in
NRAS
3 months ago
windyway
Hi all I have pernicious anemia How much & how regular do I need B12 injections? I had 6 loading over 2 weeks in December /January and every 3 months ?? I’ve talked my dr into every 2 months is this enough ? I’m having heart palpitations/ irregular fast heart beats is this connected? I’ve read this
Hi all I have pernicious anemia How much & how regular do I need B12 injections? I had 6 loading over 2 weeks in December /January and every 3 months ?? I’ve talked my dr into every 2 months is this enough ? I’m having heart palpitations/ irregular fast heart beats is this connected? I’ve read this
Windyway
in
Pernicious Anaemia Society
3 months ago
Information required
Hi I have Rheumatoid Arthritis diagnosed last year I take Methotrexate. Recently had feet vibrating sensation and palpitations. I have regular blood tests my ESR has been going up a little my joint issues are not causing me an issue. I went to Walk in centre had range of tests ECG. xrays. Fine. Blòod
Hi I have Rheumatoid Arthritis diagnosed last year I take Methotrexate. Recently had feet vibrating sensation and palpitations. I have regular blood tests my ESR has been going up a little my joint issues are not causing me an issue. I went to Walk in centre had range of tests ECG. xrays. Fine. Blòod
welsh12
in
Thyroid UK
3 months ago
Views on study design for lupus nephritis research
A research team are planning a study and want to get the views of people with lupus nephritis so they can make sure they are meeting patients’ needs in the study design. You can read more about the research in our article here: https://lupusuk.org.uk/views-on-study-design-for-lupus-nephritis-research
A research team are planning a study and want to get the views of people with lupus nephritis so they can make sure they are meeting patients’ needs in the study design. You can read more about the research in our article here: https://lupusuk.org.uk/views-on-study-design-for-lupus-nephritis-research
Debbie_kinsey
Administrator
in
LUPUS UK
3 months ago
Methotrexate and antibiotics
For anyone on methotrexate (presently or in the past), if you've had infections what antibiotics have you been prescribed? My sister has a UTI (symptoms only started today) but she took her methotrexate last night (she has rheumatoid arthritis so will also post on that site), and she's been prescribed
For anyone on methotrexate (presently or in the past), if you've had infections what antibiotics have you been prescribed? My sister has a UTI (symptoms only started today) but she took her methotrexate last night (she has rheumatoid arthritis so will also post on that site), and she's been prescribed
Grizzly-bear
in
Vasculitis UK
3 months ago
Hashimoto's and pain in muscles and joints
Hi I am new to the group.I am reaching out as I have a couple of questions.I have Hashimotos disease and on an alternating dose of 125mg to 150mg each other day of levothyroxin. I have experienced muscle aches and pains over the last 7 or so years not really sure why but I believe it's my Hashimoto's.My
Hi I am new to the group.I am reaching out as I have a couple of questions.I have Hashimotos disease and on an alternating dose of 125mg to 150mg each other day of levothyroxin. I have experienced muscle aches and pains over the last 7 or so years not really sure why but I believe it's my Hashimoto's.My
Hashiskip18
in
Thyroid 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
Malar Rash
Hi guys I was wondering what your opinion of this rash is? Does it look like a lupus rash? I’m in the MCTD and I’m on methotrexate and hydroxychloroquine. I get these rashes in a variety of different ways, always driven by sun, heat, stress or medications. Are there any other autoimmune disorders
Hi guys I was wondering what your opinion of this rash is? Does it look like a lupus rash? I’m in the MCTD and I’m on methotrexate and hydroxychloroquine. I get these rashes in a variety of different ways, always driven by sun, heat, stress or medications. Are there any other autoimmune disorders
Tonkie
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
Help on blood test results
Can anyone on here advise on these results? Does this mean I 100% don't have lupus? 🤞🏼Or are there different types of lupus that I havnt been tested for?
Can anyone on here advise on these results? Does this mean I 100% don't have lupus? 🤞🏼Or are there different types of lupus that I havnt been tested for?
Peppermints
in
LUPUS UK
3 months ago
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