subacute cutaneous vs. systemic lupus

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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  • 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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