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Hello
Hello :) My name is Jon and i am a 54 year old man living with Palindromic rheumatism and also now recently diagnosed with Rheumatoid Arthritis as well. I have started taking steroids and naproxen but still struggle in the mornings and wake up in the night with severe pain in my hands and ankle's.
Hello :) My name is Jon and i am a 54 year old man living with Palindromic rheumatism and also now recently diagnosed with Rheumatoid Arthritis as well. I have started taking steroids and naproxen but still struggle in the mornings and wake up in the night with severe pain in my hands and ankle's.
StOsyths1970
in
NRAS
4 months ago
Gluten free and vegetarian- struggling for choices
Hi, I am diagnosed with coeliac disease and I am also vegetarian. I am struggling for choices, and feel my diet is very bland and I tend to repeat meals several times a week. Particularly eating out, or free-from sections in supermarkets are difficult. They seem to cater for both, but not the two combined
Hi, I am diagnosed with coeliac disease and I am also vegetarian. I am struggling for choices, and feel my diet is very bland and I tend to repeat meals several times a week. Particularly eating out, or free-from sections in supermarkets are difficult. They seem to cater for both, but not the two combined
lauram1978
in
Gluten Free Guerrillas
7 months ago
Malar rash caused by heat?
Hello, just wondering if this looks like a malar rash, and if so, can be triggered by heat as opposed to sunlight? I'm suspected of having cutaneous lupus (awaiting further biopsy) but when I'm very hot e.g. out of the bath, in a warm building, my face will flush. I'm careful in the sun anyway - hats
Hello, just wondering if this looks like a malar rash, and if so, can be triggered by heat as opposed to sunlight? I'm suspected of having cutaneous lupus (awaiting further biopsy) but when I'm very hot e.g. out of the bath, in a warm building, my face will flush. I'm careful in the sun anyway - hats
Nome11
in
LUPUS UK
4 months ago
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Multaq Side Effects
Been on 400mg of Multaq bid for a month now and have had few issues with it so far but what I have noticed is that an hour or so after taking it I become extremely fatigued to the point I have to lie down for a nap. Is this something others have experienced? I was on Amiodarone for 6 months and had zero
Been on 400mg of Multaq bid for a month now and have had few issues with it so far but what I have noticed is that an hour or so after taking it I become extremely fatigued to the point I have to lie down for a nap. Is this something others have experienced? I was on Amiodarone for 6 months and had zero
Foreverfibber
in
Atrial Fibrillation Support
2 months ago
metastatic prostate cancer
my dad has castrate resistant metastatic pc in bones- currently his psa is going up but his scans have been stable- he gets them Every three months- after Zytiga and xtandi are there still many treatments available- the scans were stable for over a year and he gets them Every three Months-
my dad has castrate resistant metastatic pc in bones- currently his psa is going up but his scans have been stable- he gets them Every three months- after Zytiga and xtandi are there still many treatments available- the scans were stable for over a year and he gets them Every three Months-
Chris52981
in
Advanced Prostate Cancer
7 months ago
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
4 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
4 months ago
Digoxin + Lopresspor
Is anyone on Digoxin plus Lopressor long term for chronic persistent afib and how do you feel? Thanks
Is anyone on Digoxin plus Lopressor long term for chronic persistent afib and how do you feel? Thanks
farewelltoarms
in
Atrial Fibrillation Support
2 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
4 months ago
PSA Bounce
Hello and happy New year distinguished gentlemen. I was wondering if I may please get your input on my latest PSA which bounced from 1.2 to 1.6. Why did this happen and is this something I should be concerned about? Thanks so much. Regards.
Hello and happy New year distinguished gentlemen. I was wondering if I may please get your input on my latest PSA which bounced from 1.2 to 1.6. Why did this happen and is this something I should be concerned about? Thanks so much. Regards.
caysary
in
Advanced Prostate Cancer
7 months ago
3 years post successful PVI RF Ablation
Had my three year check up, ECG, Holter monitor, PM diagnostic, echo and full bloods.All good. No AFIB since ablation. BP good. PM has many years left. Only meds 15mg zarelto and 40mg micardis. Still have not got back to as much energy as I would like, maybe just getting old.
Had my three year check up, ECG, Holter monitor, PM diagnostic, echo and full bloods.All good. No AFIB since ablation. BP good. PM has many years left. Only meds 15mg zarelto and 40mg micardis. Still have not got back to as much energy as I would like, maybe just getting old.
Geoffa1
in
Atrial Fibrillation Support
2 months ago
May is Vasculitis Awarenes Month
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
May - Day 6 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is the most common of the ANCA associated vasculitisdes, but still a rare disease. Maddie is a vasculitis warrior, take a moment to read her story. To donate to #VasculitisUK ‘s campaign this month to
zoe69
Vasculitis UK
in
Vasculitis UK
2 months ago
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
4 months ago
Here We Go Again
Four days ago, I reported that after 4 ‘failed’ ablations, I had undergone a ‘successful’ cardioversion for what my EP said was atrial tachycardia. For four days, I enjoyed normal sinus rhythm and a heart rate of between 50 and 70bpm. However, my joy was short lived. This evening, whilst watching a
Four days ago, I reported that after 4 ‘failed’ ablations, I had undergone a ‘successful’ cardioversion for what my EP said was atrial tachycardia. For four days, I enjoyed normal sinus rhythm and a heart rate of between 50 and 70bpm. However, my joy was short lived. This evening, whilst watching a
frankiec5
in
Atrial Fibrillation Support
2 months ago
High Cholesterol
Any advice please on my lipid results taken from a finger prick sample when attending an appointment at Our Future Health research programme. They were elevated . Total cholesterol 7.6 mmol/L HDL 1.22 mmol/AL Triglycerides 4.72 mmol/L They did not record LDL unfortunately. It was non-fasting.
Any advice please on my lipid results taken from a finger prick sample when attending an appointment at Our Future Health research programme. They were elevated . Total cholesterol 7.6 mmol/L HDL 1.22 mmol/AL Triglycerides 4.72 mmol/L They did not record LDL unfortunately. It was non-fasting.
Maynan17
in
Thyroid UK
2 months ago
Digoxin
Can I start Digoxin while still weaning off of Lopressor? Doc said stop lopressor and start dig no weaning needed I am a little nervous after all I read Thanks for Comments
Can I start Digoxin while still weaning off of Lopressor? Doc said stop lopressor and start dig no weaning needed I am a little nervous after all I read Thanks for Comments
farewelltoarms
in
Atrial Fibrillation Support
2 months 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
4 months ago
GCA - kidney problem
Hi All warriors. Diagnosed with GCA July, 2023. Put on 60 mg now tapered down to l7mg (Dec. 2023). All symptoms under control at this time. My last blood work showed my Creatinine at 104 and GFR at 45. This showed a mild to moderate decrease in kidney function. As a result I had a kidney/bladder
Hi All warriors. Diagnosed with GCA July, 2023. Put on 60 mg now tapered down to l7mg (Dec. 2023). All symptoms under control at this time. My last blood work showed my Creatinine at 104 and GFR at 45. This showed a mild to moderate decrease in kidney function. As a result I had a kidney/bladder
Groda
in
PMRGCAuk
7 months ago
Ventricular ectopic runs
Just been to the GP over the palpitations I've been having for a year or so and he said they are (from the way I described them to him) "ventricular ectopic runs" and I'm wondering what this community has to say about them...? They do feel ectopic as I get a 'missed' beat followed by a bigger one and
Just been to the GP over the palpitations I've been having for a year or so and he said they are (from the way I described them to him) "ventricular ectopic runs" and I'm wondering what this community has to say about them...? They do feel ectopic as I get a 'missed' beat followed by a bigger one and
stoneyhouse
in
Atrial Fibrillation Support
3 months ago
May - Vasculitis awareness month
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
May - Day 3 #vasculitis awareness month. Granulomatosis of Polyangiitis or GPA (former Wegener's) is an ANCA assosiated vasculitis and can be severe, even fatal if not treated early and correctly. Nothing is more empowering than #patient stories. This is Emma's story. To donate to #VasculitisUK
zoe69
Vasculitis UK
in
Vasculitis UK
3 months ago
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