Tweet
As some of you may remember, I have been having serious issues with conjunctival inflammation and periorbital oedema for many months, which have not been resolved by any of the ophthalmic interventions suggested my specialist. Over the last couple of months the problems of skin/eye inflammation and oedema have got increasingly worse, with a plethora of different suggestions for the cause from different GPs dermatologist, ranging from food/medicine allergy to rosaceaous lymphoedema. We've ruled out all causes of systemic oedema (low serum albumin, ultrasound scan/x-ray vascular blockage in neck or chest etc); the pain and swelling also failed to respond to combined course of strong antihistamenes and oral prednisone.
During the recent heat wave we've had in the UK, it has become very obvious that the redness and oedemic swelling have been much worse on exposure to UV light; also I've developed sores and scaling on my ears that look very much like discoid lupus lesions. Reading up on lupus, I find that periorbital oedema, facial redness and swelling are entirely consistent with both lupus and UCTD, with which I was diagnosed last year. The only thing that has eased the discomfort at all is staying indoors with blinds shut for a couple of days; on even moderate sun exposure, the redness and swelling get worse instantly.
I've been taking lymecycline for the last 3 weeks after a tentative dx of rosacea from the dermatologist. So far it has had no effect. Reading the info about side effects, it says that lymecycline can exacerbate photosensitivity and shouldn't be taken if you suffer from lupus. I'm unsure whether to continue with it; it hasn't helped so far, but want to take it for long enough to be sure that it's having no effect on the rosacea-like symptoms to exclude rosacea.
Annoyingly, my GP ignored the request from my ophthalmologist to refer me to an ocular inflammation specialist at Moorfields. I only found this out by accident, it's now been rectified but it will be another couple of months before I can see anyone who might be able to confirm a diagnosis of ocular lupus. I'm really angry with my GP, and also the dermatologist, neither of whom seem to have any idea of the common manifestations of UCTD; also the junior rheum who dismissed the possibility of the oedema being a lupus-like symptom because I didn't have the classic rash in the malar area. I feel it's very unlikely to be rosacea as I also have similar intense burning, redness and inflamed veins (telangiectasia) on my lips, palate and throat, which is also flaring concurrently with eyes/face and are all consistent with mucocutaneous connective tissue disease.
If anyone else is experiencing extreme ocular discomfort and swelling, which does not resolve with the usual ophthalmic treatments (especially if you suffer from any sort of autoimmune disease), it may be worth investigating the possibility of ocular lupus. Unfortunately, the cutaneous form of the disease does not present with any of the usual serological markers of SLE, so diagnosis is probably very difficult especially in the early stages of the disease. It does seem that it responds quite well to antimalarial drugs (plaquenil), I'm hoping that increasing my dose of this will eventually help this unbearable and disabling flare into remission.
http://rheumatology.oxfordjournals.o...6/12/1757.full
http://www.uveitis.org/medical/articles/case/DLE.html
During the recent heat wave we've had in the UK, it has become very obvious that the redness and oedemic swelling have been much worse on exposure to UV light; also I've developed sores and scaling on my ears that look very much like discoid lupus lesions. Reading up on lupus, I find that periorbital oedema, facial redness and swelling are entirely consistent with both lupus and UCTD, with which I was diagnosed last year. The only thing that has eased the discomfort at all is staying indoors with blinds shut for a couple of days; on even moderate sun exposure, the redness and swelling get worse instantly.
I've been taking lymecycline for the last 3 weeks after a tentative dx of rosacea from the dermatologist. So far it has had no effect. Reading the info about side effects, it says that lymecycline can exacerbate photosensitivity and shouldn't be taken if you suffer from lupus. I'm unsure whether to continue with it; it hasn't helped so far, but want to take it for long enough to be sure that it's having no effect on the rosacea-like symptoms to exclude rosacea.
Annoyingly, my GP ignored the request from my ophthalmologist to refer me to an ocular inflammation specialist at Moorfields. I only found this out by accident, it's now been rectified but it will be another couple of months before I can see anyone who might be able to confirm a diagnosis of ocular lupus. I'm really angry with my GP, and also the dermatologist, neither of whom seem to have any idea of the common manifestations of UCTD; also the junior rheum who dismissed the possibility of the oedema being a lupus-like symptom because I didn't have the classic rash in the malar area. I feel it's very unlikely to be rosacea as I also have similar intense burning, redness and inflamed veins (telangiectasia) on my lips, palate and throat, which is also flaring concurrently with eyes/face and are all consistent with mucocutaneous connective tissue disease.
If anyone else is experiencing extreme ocular discomfort and swelling, which does not resolve with the usual ophthalmic treatments (especially if you suffer from any sort of autoimmune disease), it may be worth investigating the possibility of ocular lupus. Unfortunately, the cutaneous form of the disease does not present with any of the usual serological markers of SLE, so diagnosis is probably very difficult especially in the early stages of the disease. It does seem that it responds quite well to antimalarial drugs (plaquenil), I'm hoping that increasing my dose of this will eventually help this unbearable and disabling flare into remission.
http://rheumatology.oxfordjournals.o...6/12/1757.full
http://www.uveitis.org/medical/articles/case/DLE.html
Comment