DOES ANYONE HAVE LUPUS?

Wrong thread!

A friend had a glass patio table smashed when it blew over in one of the storms. She then found her facebook flooded with tables/patio furniture. She was sure she had told nobody about it. Then a day or two later it dawned on her - she had told her daughter about it in a telephone call. Technology was listening in!

Yes I was diagnosed with Lupus about 20 years ago whilst in hospital with spinal infections. I was put under a Consultant Rheumatologist who I’ve seen regularly over the years. I’ve also got lots of other problems due to being on antibiotics for many many years for bone infections so that sometimes complicates a flare up.
I’ve recently been diagnosed with Fibromyalgia which complicates it somewhat too. Most of the tablet I’ve tried that were recommended for Lupus but I didn’t like the side effects of most of them. Especially the one that can cause wet macula degeneration as my DM had that, so much to my Consultants disgust I’ve come off most of the medication he’s prescribed and try to manage it and flare ups when they happen. It is exhausting and horrible and seems to go on indefinitely sometimes but I’m in chronic pain with chronic fatigue most of the time so just try and cope as best I can with it all. There is a Lupus website and helpline I think and there’s also books which I read a long time ago. Maybe they will help you.

BigBertha funnily enough I was also diagnosed with SLE at 50 after years of illness. Maybe doctors take us more seriously once we reach a certain age? I used to have a fantastic rheumatologist, but she moved on a few years ago and it’s been a constant struggle ever since. I am lucky to have no real organ involvement, so the next doctor I saw decided she would ‘work towards taking me off all medication’ as though I’d suddenly get better. She cut down my Hydroxychloriquine which sent me into a month long flare, leaving me bedridden.
I’ve also never heard of chilblain lupus. I really hope you get a good doctor who will understand your illness and help you.

@busybee6969 you might be better off asking about this on Mumsnet. They have an active autoimmune disease forum there.

was ill all last year sinus problems nose checked its not, dental problems for no reason,then nov hands went a real mess. saw gp rushed same day urgent blood tests week later saw skin specialist.on medication to pump up veins in my hands, just started malarie pills, now on steroids. just done 10 days antibiotics, wearing thick gloves trying to get my hands to clear up, trust me to get something very rare, gp has just referred me urgent to another specialist as my hands are still bad, very sore and painful,roll on better weather

I do. Its full name is Systemic Lupus Erythmatous. I have had this for many years but only diagnosed twenty years ago when I was 50. I have not heard of Chilblain Lupus. Lu[us is an auto-immune disease of connective tissue which can affect all parts of the body. The NHS website has more information. I hope you are going to be properly monitored and managed.

yes sorry hands so swollen will the chillblaines i mistyped

Do you mean lupus?