To cut a long story short I was diagnosed -via letter- some months ago by a dermatologist as having subacute cutaneous lupus, (my main symptom is a photosensitive raised rash, in addition to some join pain plus fatigue) When I went to my GP for some clarification with reference to this diagnosis, she referred me on to a rheumatologist, due to joint pains.
The rheumatologist prescribed plaquinil and regular monitoring, including ECG and chest x-ray, as well as further blood tests, this form of monitoring suggest they suspect SLE as opposed to SCLE which from what I can gather from my own research tends to remain fairly 'localised' to the skin, and rarely develops on into full-blown systemic lupus. I'm quite confused.
I was wondering if anybody would mind sharing with me their experiences in relation to SCLE, and whether anyone know exactly how doctors go about 'classifying 'lupus patients; are their particular pathological differences between the types of lupus?
I know these are really questions for the consultants, however when you are in that little room faced with lots of new information your mind goes a little blank. I've only now really started digesting everything that has been told to me in relation to my health.Sorry if this all sounds a bit vague, this is my first time using such a forum.
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anjia
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I develped SCLE a few years ago. I already had SLE plus an overlap of rheaumatoid arthritis. Initially i was put on high dose prednisolone, reducing to 5mg. I also increased my hydrxychloraquine from 200mg to 400mg. It seems to be keeping it under control. All i have now is a few red spots on my arm.
Don't get me wrong. SCLE is absolutely horrible. Those were the words spoken to me by a nurse at A&, who saw my rash at its worst. But it is a more benign manifestation of lupus. There are worst forms of lupus. From what i know, 50% of people with SCLE have SLE present. Hope this helps.
when I was first being diagnosed the consultant wasn't sure if I had SCLE or SLE after blood tests ect it turned out to be SLE and I was swiftly put on plaquinel and prescribed cream for my rashes. This seems to have kept my SLE on an "even keel". good luck with your rhumey. All the best.
hi i to was diagnoised with subacute 3 years ago but i couldnt understand if i had subacute which they say is brought on by meds i wasnt on any meds so i was confused but like you all my notes say SLE , since being diagnoised i am on 130 tablets aweek (im sure most of us are) and i have also the usual raynaulds/syjorns/fatigue/insomnia/day/night sweats/constant cold symptons/emphazema/copd/ibs.joint/muscle aches / alopica
. i take methotrexate once a week which clears my skin from discs but still have hives everyday, plaquinil does help with joints, i also find antihistim a god send for itching, hives and cold symptons, i actually dont get on with my rheumy but feel ithat if i dont go he will stop my methotrexate even though my dermy put me on it she has now left the hospital i attend and her "replacement" says hes too busy to monitor me ever 3 months so therefore my gp has 2 , hope ive eased ur mind , until we have MORE awareness of our disease i feel that we will be treated this way
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