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Discussion Starter · #1 ·
Hi,

I'm new here, but not new to lupus. I was diagnosed in about 1980 with discoid lupus, biopsy. Somewhere along the line, the diagnosis was changed to subacute cutaneous lupus, not that I knew. In 1999, or there about, I was told I had fibromyalgia which, at that time, was a "nothing" disorder, no offense. Now, my blood tests are apparently showing I have SLE....what are the chances? I've seen more doctors in the past three months than I've seen in the past 10 years!!!!!! I've had episcleritis, and now apparently "moderate to severe" periodontal disease...wth! But not because of my oral hygiene but it's all my fault, 'cause I smoke?????? I'm in tears today, cause I'm only 44 and my body is falling apart, and it apparently is all my fault cause I smoke??? I'm so very angry at the moment, and not happy to make this my first post!!! I'm sorry if I've offended anyone because of my "BAD" habit, but come on!!!!! Can I please get a "little" break?

Sorry for the rant,

Colleen
 

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Hi Colleen,

Welcome.

I looked up periodontal disease and checked out the causes. Here is what I found.

Gingivitis almost always begins with plaque. This invisible, sticky film is composed mainly of bacteria. Plaque forms on your teeth when starches and sugars in food interact with bacteria normally found in your mouth. Brushing your teeth removes plaque. But plaque re-forms quickly, usually within 24 hours.
Plaque that stays on your teeth longer than two or three days can harden under your gumline into tartar (calculus). Tartar makes plaque more difficult to remove and acts as a reservoir for bacteria. What's more, you usually can't get rid of tartar by brushing and flossing — you need a professional dental cleaning to remove it.
The longer that plaque and tartar remain on your teeth, the more they irritate the gingiva, the part of your gum around the base of your teeth. In time, your gums become swollen and bleed easily.
I found it here. It didn't list smoking as a cause. What doctor told you that?

http://www.mayoclinic.com/health/gingivitis/DS00363/DSECTION=causes

You have quite a bit going on the last 3 months.:hug: I am so sorry you are feeling down.

You have found a great site full of caring members who are willing to lend their support and their knowledge they have of living with lupus. Plus the information on lupus is up to date.

Take care,
Lyn
 

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Hello Colleen and :welcome:

Please just let me reassure you, you haven't offended anyone :hug: We all have our down moments and are familiar with the disappointments and frustration this disease can throw at us.

Some people who have an original diagnosis of skin lupus do go on to have SLE. I'm not sure what the percentage is but it is definitely not unheard of.

Do you see a rheumatologist currently or is your primary doc a dermatologist? It would be worthwhile getting a referral to a rheumy if that hasn't been done already to ensure correct treatment and follow up.

I know that things seem very bleak now but they will look up and we'll happily help as much as we can.

:grhug:

Katharine
 

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Hi Colleen, welcome to the board.

Unless the person who told you that smoking was the evil which caused ALL the problems, was a dentist, I would not get too upset about this. Granted, better dental hygiene will help anyone. The problem that smoking can cause is that as one inhales, the temp in the mouth escalates due to the heat from the burning tobacco. This can cause burning of the tissues in the mouth, not that one would notice, but enough that it can irritate the tissues in the mouth. Then, if calculus is allowed to build, that further irritates the gum tissue. So, given those, you are going to have an increase in periodontal disease risk.

Another issue could be that you are having less saliva in your mouth. Sjogren's Syndrome is known to cause less saliva, less tears, less moisture in the skin, etc. So, if your rheumy has not tested you for SS, I would suggest you might think about it. Drinking more water will help to wash bacteria/plaque out of your mouth.

I've known several people who were diagnosed with both discoid and systemic lupus. It seems the more accurate diagnosis is, the more things overlap, and not just lupus either.
Sally
 

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Discussion Starter · #5 ·
Thank you all for your responses. I have been doing quite a bit of reading on this site and others and thought maybe someone else might have the same problem. You seem like a group of caring people and I'd like to be a part of that group.

I also thought maybe I should give a bit more information about myself, without the drama, lol!

I think the reason I was so upset about the dentist giving me the periodontal disease diagnosis was that he said I have a lot of bone loss and that if that's going on in my mouth, there's stuff going on in the rest of my body too. Ha, like I didn't know that!

My knees and hips bother me all the time now, instead of just once in a while. I have had headaches for the past month almost every day, not severe most of the time, just nagging. My face is a mess with the rash, as are my ears. I have been doing all the stuff I'm supposed to with sunblock, long sleeves, hat, etc. but it doesn't seem to be helping.

As far as doctors, I have been to my family physician who referred me to a rheumatologist. Saw him once and he ordered some more blood work but I don't go back to see him til Oct. 30th. The only results I have so far are a positive Anti-dsDNA, and elevated ANA. I don't know the specific numbers. My family doctor did consult with the rheumy and they put me on plaquenil about 7 weeks ago. I guess I thought it would be doing its magic by now, but I know it takes time.

Anyway, that's a bit of my story, long-winded as it is.

Thank you again for welcoming me to your group,

Colleen
 

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A warm welcome to the forum Colleen :)

Your story is a bit like my own, diagnosed with discoid 35+ years ago revised correctly to SCLE (subacute cutaneous), about 13 years ago. SCLE was only identified about 30 years ago and info about it didn't trickle down into the general body of specialist medical knowledge for about 20 years.

SCLE is one of the five groups of lupus and one of the three groups of lupus specific skin.


These are grouped according to what degree of systemic disease they are usually associated with.

1. Acute cutaneous (ACLE) means the sorts that accompany SLE mostly the 'butterfly' or malar rash on the face.

2. Chronic Cutaneous, CCLE (usually the 'discoid' type but there are other rarer sorts) that are not usually associated with SLE or any systemic symptoms. The term discoid is still sometimes wrongly used to mean any sort of cutaneous lupus, that isn't the malar rash

3. Subacute cutaneous (SCLE) is often associated with less serious systemic symptoms and the majority of those with this sort of skin have sufficient criteria to be classed as having SLE. Subacute means under or less than acute, as in subgroup.
The anti - Ro antibodies are characteristic of this sort of skin lupus and are also found in about one third of those who have lupus without any skin involvement. The anti- Ro antibodies are also associated with Sjogren's disease.

So I think the questions are, what blood tests are showing possible systemic disease now compared with before and what symptoms do you have apart from the skin.

I am sorry about the peridontal disease and unhelpful, comments. I am sure that smoking is not good for dental and gum health. It constricts the blood vessels apart from anything else hindering health & healing. Smoking is also associated with an increased incidence of rheumatoid arthritis, skin lupus especially SCLE, very possibly SLE and makes the anti malarials less effective. It is regarded nowadays as an environmental trigger and exacerbator.

Having dry eyes is common in lupus as well of course as in Sjogren's when the mouth is likely to be dry too. I should think the smoke is likely to irritate/dry eyes and mouth as it does skin causing smoker's wrinkles. In fact know it does because I smoke myself, so no special reproach to yourself, just lamentable fact :sad:
When the mouth is dry bacteria flourish. Biotene dental care products are good and sucking sugar free sweeties helps.

Let us know how you get on and best of luck

Clare

http://www.dermnetnz.org/immune/cutaneous-lupus.html


Subacute images
http://www.dermis.net/dermisroot/en/38885/diagnose.htm

"Discoid"
http://www.dermis.net/dermisroot/en/38333/diagnose.htm
 

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Hi and welcome to the site, it is a great place to get info and support. You have had a lot to take in, in the last few months. It will take time to adjust and for the meds to work.

Deb
 

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hi welcome
all best and welcome to this lovely site very good latest info on here lovely friendly chat room good fun lv countrylass
 
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