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Autoimmune disease

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Any one with lupus.

8 replies

Nic083 · 15/06/2017 19:37

Just wanting to chat with others with lupus.
I was diagnosed at 18 (15 years ago) with discoid lupus. The symptoms I have are mainly the butterfly rash & tiredness.
I don't take medication, I don't cover it up (don't wear any make up, if people don't like the way I look that's their problem) I do get a few stares when I have a flare up but people that know me just see me for who I am.
But now my children are getting older I'm so worried they might end up with it to.

Smile
OP posts:
Cocolepew · 15/06/2017 19:41

Me Smile I have SLE.
I know what you mean about your DCs Im keeping a close eye on DD2 who is 15.
She has had symptons in the past that could point towards Lupus.
Can I ask why you dont take any medication ? It was the first thing to help my fatigue .

Nic083 · 15/06/2017 19:52

Was never prescribed anything officially (said I can have antimalarial tablets if I wanted) was only under a hospital for it during diagnosis never been referee to any1 since.

OP posts:
Cocolepew · 15/06/2017 19:58

It was Plaquneil I got. Im surprised you haven't had any follow ups at all.

Im supposed to see my rheumatologist twice a year but the waiting lists are ridiculous and Im lucky if it's once every year and a half.

Nic083 · 15/06/2017 20:45

When first went docs they didn't know what was (rash). Tried different creams & nothing worked just got worst. Sent to dermatology who (after a few visits) did a biopsy, found it was discoid lupus & sent my gp a letter saying what it was & what I could take if I wanted. Never thought I should be under a hospital or anything. Smile

OP posts:
PowerPantsRule · 19/06/2017 08:45

Nic you ought to get seen more than that! You too Cocole! Lupus cam get very serious - it is terrible they are not looking after you.

I am under investigation for lupus - I have a gene that says I have a 50/50 chance of having it and I have lots of symptoms BUT test negative on blood and no rash! I FEEL like I have lupus though....

Cocolepew · 19/06/2017 16:54

I know! My gp is quite good, I need a kenalogue injection twice a year and he ended up arranging and giving it to me last summer.
Waiting lists are awful , even if you're already being seen.
Ive been waiting since august for a gynae appointment.

copperthing · 02/07/2017 10:05

I have lupus - diagnosed last year when my joints started flaring up for the first time but probably had some form of it for years now.

I have POTS too but I'm told they're not connected although I think they are.

Anyway, plaquinol had made a huge improvement on the fatigue side - I can easily get through a day before slumping for the evening. I have to pace myself - catch up on rest in weekends, try not to work travel etc.

I see the rheumatologist every three months at the moment.

DCFlemingreportingforduty · 09/08/2017 01:59

I was diagnosed at 21 with mixed connective-tissue disease, subsequently re-diagnosed as Systemic Lupus Erythematosus a few years later, with symptoms of Sjögren's syndrome added in latterly -- just for fun.

I was really lucky in getting a quick diagnosis, as my GP was brilliant and recognised my weird symptoms of exhaustion, incredible weakness, and joint pain, along with Raynauds syndrome, as an autoimmune condition. I was a student at Oxford at the time, and I ended up with one of the leading professors of rheumatology in the country as my consultant, which obviously helped massively. I think having healthcare professionals who really understand autoimmunity is a huge benefit, and if you can find a suitable specialist to advise on the right way to look after your discoid lupus, OP, I think that will be the way to go.

My disease was very active and quite debilitating in my early 20s. I was on hydroxychloroquine sulphate (Plaquenil), which is probably the antimalarial that was mentioned to you, and lots of different NSAIDS to control the joint pain. The Plaquenil worked really well to address the general feeling of exhaustion/ weakness. In my later 20s, and for most of my 30s, I was pretty symptom-free, with a few bad flare-ups and weird systemic inflammatory events along the way. I'm grateful I've not had to take steroids so far, but I wouldn't rule it out in the future if the disease became very active again. I'm now 42...

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