I would like to get some feedback on subacute cutaneous lupus. I have the nodules and sometimes they are more painful than at other times. I talked with my dermatologist and he told me to try taking 800 mg of ibuprofin before I go to bed. That has not helped much. I went to the GP because I wondered if I had a bladder infection even though I didnt have the symptoms. I have just a mild one so am on an antibiotic for that. Where these nodules are I feel like my skin hangs over my belt and causes additional pressure. Does anyone out there experience these symptoms? I would love to talk with you. I am not sure if I should go for further testing or just wait it out. I get a little nervous sometimes that something more serious is going on. I read surferboys posts this morning and I too have been having some pain, sharp, between ribs and chest on right side. If anyone could give me any advice or encouragement I would be most grateful! :worried:
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Welcome to the forum Tricia
I'm sorry about your diagnosis - it sounds very uncomfortable !
I'm sorry but I haven't heard of nodules associated with subacute cutaneous, that's assuming you mean small lumps under the skin?
Typical subacute skin lesions ( abnormalities) come in two major sorts, rough scaley areas like psoriasis and red wavy rings as shown in the pictures here.
http://www.dermis.net/dermisroot/en/38885/diagnose.htm.
What treatment are you getting for this lupus and do you have any other lupus symptoms such as joint aches and pains or fatigue ? Do you have any skin problems anywhere else ? SCLE is usually on sun exposed areas typically upper arms, back and chest and occasionally on the face.
I hope they have done the full range of tests and a urine test to check there are no hidden signs of disease such as anemia, or potential risks. Most people with subacute have two antibodies and some systemic disease although very rarely serious organ involvement. The usual first line therapy for skin and general disease is an anti malarial.
Sometimes lesions themselves are treated with steroid injections that can reduce inflammation fast. Sometimes a short course of oral steroids is used to reduce general inflammation.
If you don't have much confidence in this doctor and the treatment he's offering maybe you should get a second opinion.
Sorry not to be more help.
Keep in touch and I hope you'll be feeling better soon.
Bye for now
Clare
ps It's best not to take a sulfonamide antibiotic - they can trigger flares.
I'm sorry about your diagnosis - it sounds very uncomfortable !
I'm sorry but I haven't heard of nodules associated with subacute cutaneous, that's assuming you mean small lumps under the skin?
Typical subacute skin lesions ( abnormalities) come in two major sorts, rough scaley areas like psoriasis and red wavy rings as shown in the pictures here.
http://www.dermis.net/dermisroot/en/38885/diagnose.htm.
What treatment are you getting for this lupus and do you have any other lupus symptoms such as joint aches and pains or fatigue ? Do you have any skin problems anywhere else ? SCLE is usually on sun exposed areas typically upper arms, back and chest and occasionally on the face.
I hope they have done the full range of tests and a urine test to check there are no hidden signs of disease such as anemia, or potential risks. Most people with subacute have two antibodies and some systemic disease although very rarely serious organ involvement. The usual first line therapy for skin and general disease is an anti malarial.
Sometimes lesions themselves are treated with steroid injections that can reduce inflammation fast. Sometimes a short course of oral steroids is used to reduce general inflammation.
If you don't have much confidence in this doctor and the treatment he's offering maybe you should get a second opinion.
Sorry not to be more help.
Keep in touch and I hope you'll be feeling better soon.
Bye for now
Clare
ps It's best not to take a sulfonamide antibiotic - they can trigger flares.
Clare,
Thanks for your encouragement. I guess I should let you know that I always refer to my lupus as subacute cutaneous lupus, but I did have one of the nodules removed and it was lupus profundus or pannicalitis (sp?) Does that make a difference in what we were discussing. I am on imuran 200mg, prednisone 5mg, quinicrine (cousin to placquenel..I had reaction to placquenel) synthroid, prilosec. Do you know anything about lupus profundus? May that is what is causing more of my symptoms. Thanks.
Thanks for your encouragement. I guess I should let you know that I always refer to my lupus as subacute cutaneous lupus, but I did have one of the nodules removed and it was lupus profundus or pannicalitis (sp?) Does that make a difference in what we were discussing. I am on imuran 200mg, prednisone 5mg, quinicrine (cousin to placquenel..I had reaction to placquenel) synthroid, prilosec. Do you know anything about lupus profundus? May that is what is causing more of my symptoms. Thanks.
Hello Tricia
Perhaps you are simply confused: lupus profundus is subcutaneous meaning under the skin. The term subacute means "less than acute" Skin lupus is divided into three groups according to the degree of associated systemic disease. Skin problems associated with SLE are called 'acute cutaneous',ACLE, mainly the malar or butterfly rash; people with subacute cutaneous, SCLE, usually but not always have some degree of systemic illness and as I said it has quite distinctive lesions. The third group is chronic cutaneous (CCLE) by definition only the skin is affected and discoid is the most common sort.
I still don't know what we are discussing. If it is LP, all I can say about it is that is a very rare sort of CCLE. It's like discoid lupus lesions in the deep layers of fat under the skin. I only know what I have read about it online. At a talk on laser therapy to repair damage from lupus skin, I saw before and after photos of a woman who had a golf ball sized hollow on her temple the result of an LP lesion.
Like all sorts of CCLE, some cases might be the first sign of SLE or accompanied by some typical symptoms of systemic disease, rarely, outright SLE.
Hence the need for testing at time of diagnosis, regular tests afterwards and awareness of signs of spreading disease. If your dermy never did a complete blood count or the usual lupus tests, ask for them to be done including urine and tell him of any health problems.
Some sources refer to problems diagnosing and the need to exclude other possible causes of similar symptoms The most thorough discussion of it that I have found is
http://books.google.co.uk/books?id=...&oi=book_result&resnum=10&ct=result#PPA862,M1
Chapter 29 p 860
You appear to be getting the usual sort of treatment for skin lupus. If the LP isn't responding I suggest getting a second opinion as to what might be tried next.
Funny, I didn't notice your reference to surferboy and chest pains despite reading your post several times. I just wondered why your doctor would have prescribed Iboprufen for skin lesions. Anyways, if chest pains is what we are discussing, there are innumerable causes of chest pain including over anxiousness and general stress as well as muscular. A lot depends on their nature.
Probably the best thing for the occasional niggle, is to see your GP. He should know from the description of the pain and on examination if there is anything to worry about.
Each of us has to decide for ourselves what is urgent and what isn't, which isn't always easy. It's a good idea to be informed about the signs of a heart attack in women as they can be different from in men, then we have to use our own judgment.
We aren't doctors so we can't diagnose or give medical advice.
All the best
Clare
I suggest you start calling your lupus by its proper name to avoid misunderstanding. It would have made a difference to me saving me time and effort and of course it makes a considerable difference to anybody who knows anything about skin lupus. If you call it that to doctors it suggests you don't know what you are talking about.I guess I should let you know that I always refer to my lupus as subacute cutaneous lupus, but I did have one of the nodules removed and it was lupus profundus or pannicalitis (sp?) Does that make a difference in what we were discussing
Perhaps you are simply confused: lupus profundus is subcutaneous meaning under the skin. The term subacute means "less than acute" Skin lupus is divided into three groups according to the degree of associated systemic disease. Skin problems associated with SLE are called 'acute cutaneous',ACLE, mainly the malar or butterfly rash; people with subacute cutaneous, SCLE, usually but not always have some degree of systemic illness and as I said it has quite distinctive lesions. The third group is chronic cutaneous (CCLE) by definition only the skin is affected and discoid is the most common sort.
I still don't know what we are discussing. If it is LP, all I can say about it is that is a very rare sort of CCLE. It's like discoid lupus lesions in the deep layers of fat under the skin. I only know what I have read about it online. At a talk on laser therapy to repair damage from lupus skin, I saw before and after photos of a woman who had a golf ball sized hollow on her temple the result of an LP lesion.
Like all sorts of CCLE, some cases might be the first sign of SLE or accompanied by some typical symptoms of systemic disease, rarely, outright SLE.
Hence the need for testing at time of diagnosis, regular tests afterwards and awareness of signs of spreading disease. If your dermy never did a complete blood count or the usual lupus tests, ask for them to be done including urine and tell him of any health problems.
Some sources refer to problems diagnosing and the need to exclude other possible causes of similar symptoms The most thorough discussion of it that I have found is
http://books.google.co.uk/books?id=...&oi=book_result&resnum=10&ct=result#PPA862,M1
Chapter 29 p 860
You appear to be getting the usual sort of treatment for skin lupus. If the LP isn't responding I suggest getting a second opinion as to what might be tried next.
Funny, I didn't notice your reference to surferboy and chest pains despite reading your post several times. I just wondered why your doctor would have prescribed Iboprufen for skin lesions. Anyways, if chest pains is what we are discussing, there are innumerable causes of chest pain including over anxiousness and general stress as well as muscular. A lot depends on their nature.
Probably the best thing for the occasional niggle, is to see your GP. He should know from the description of the pain and on examination if there is anything to worry about.
Each of us has to decide for ourselves what is urgent and what isn't, which isn't always easy. It's a good idea to be informed about the signs of a heart attack in women as they can be different from in men, then we have to use our own judgment.
We aren't doctors so we can't diagnose or give medical advice.
All the best
Clare
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