Discoid Lupus
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- Clare10
- micklady
- mysharonna
- Clare10
- mysharonna
- micklady
- bellpunch
- tamara_peters
- lady75
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» Clare10 - Discoid Lupus
Thank you very much for this sympathetic article on "Discoid" Lupus.The concerns of those with forms of cutaneous lupus are regularly dismissed. They can effectively ruin lives and invariably involve great emotional and psychological suffering as well as considerable physical discomfort and sometimes pain.
Society is increasingly concerned with image and personal appearance. It is assumed that everything can be put right if a person only tries hard enough. People with facial disfigurement or "spots " are scorned and feared Perhaps it is contagious ? and why doesn't she do something about her appearance ?
Acne ,Rosacea ,cosmetic alteration of various body parts are all considered " treatable"
People whose appearance is affected by cancer and therapy get help with camouflage and wigs.
The person with skin lupus is the modern day leper.
We get sick of being told we should count ourselves ' lucky " that this is all we've got. Constant failure to acknowledge and validate our concerns and are made to feel guilty for caring even sometimes that it is our own fault the result of moral failure and personal inadequacy or bad life habits.
As if it were some sort of competition, " my lupus is worse than yours ".
We simply do not feel comfortable in the company of those with systemic involvement. It is very understandable on both our parts !
Many of the issues discussed in support groups do not in fact concern us. This is why Peppy and myself founded " Just for Discoid ( Cutaneous) Lupus ", a unique place for information and support.
We each had been alone with skin lupus for some 25 years without having any contact with anybody else, feeling freaks. It makes all the difference in the world to know that there are others out there in a similar predicament.
Failure to diagnose and failure to treat promptly and effectively, far too often results in severe scarring from discoid lesions including baldness, as the hair will not grow again once the follicles are destroyed.
Discoid lupus is the most common form of chronic cutaneous lupus. There are several others : tumidus, panniculitis, lesions on genitals, soles and palms, blistering types.
The third major category of Lupus skin lesions is "Sub acute" lesions. More people with these lesions have greater general systemic involvement.
About half satisfy enough criteria for an SLE diagnosis.
We often feel that we come at the bottom of the lupus ladder indeed the bottom of the dermatological ladder along with other autoimmune skin conditions.
There are many potentially effective therapies these days but medical ignorance leads to lack of effective & timely treatment resulting in deep misery.
m those whose sytemic involvment is successfully controlled may find their skin lesions need additional therapy. Many rheumatologists are not so interested in this care.
Thank you again for drawing attention to our difficulties and needs and including a link to the forum.
Clare
www.delphi.com/lesion
" Just for Discoid Lupus"
-- posted by Clare10
» micklady - Re: Discoid Lupus
In response to message posted by Clare10:Hello and nice to hear from you, Clare! Your info was great and glad to hear that you have come forward to help. this site has been so very helpful for me and good to hear you have a site too! Karyn really enjoyed this article...thanks as always for the great info!
-- posted by micklady
» mysharonna - discoid lupus
Hi. I am new to this site so I hope I am posting this correctly! The article on discoid lupus was very informative. I have been diagnosed with discoid lupus but I have alot of other symptoms that do not seem to be addressed. Can discoid lupus also have joint pain, mouth and nose ulcers?Any help would be appreciated!
Have a great day!
-- posted by mysharonna
» Clare10 - Re: discoid lupus
In response to message posted by mysharonna:Hello mysharonna
Yes there can be such symptoms, even when ANA is negative, particularly the ulcers which are another skin sign of any type of lupus. Anemia is another which is not uncommon. The more antibodies a person has the more likely they will have a certain degree of systemic involvment. but it is not a hard and fast rule.
I know someone with the same sort of skin lesions as myself plus more other symptoms who is both ANA and anti-Ro negative. It was years before she got a proper diagnosis and proper treatment, based on a competent biopsy because she was repeatedly told it could not be this sort of lupus because there are no anti- bodies.
Unfortunately many doctors will not recognise the possibil complexity and variability of lupus. It is very important indeed to have a thorough lupus work up at the time of initial diagnosis and regularly for a couple of years thereafter, to make sure the discoid lesions are not the very first sign of systemic illness involving the inner organs..
Too often doctors will persist in refusing treatment with antimalarial/s, relying on UV avoidance and steroid creams, not seeing the discoid lesions as anything but the skin or part of underlying systemic illness that must be controlled as soon as possible to avoid further scarring and disfigurement and the deep suffering this can cause.
The anti- malarials will also help with the arthralgias, as well as fatigue which is also commonly experienced by many those with mainly skin lesions.
You are most welcome to visit " Just for Discoid"
www.delphi.com/lesion.
Best Wishes
Clare
-- posted by Clare10
» mysharonna - mysharonna
In response to message posted by Clare10:Hi Clare and thanks so much for your reply! I have to say, in reading all the posts here that you are all such a peaceful and friendly bunch!!
You really hit the nail on the head when you said that doctors advocate the creams and UV avoidance, as opposed to prescribing antimalarials. My problem seems to be that my rheumatologist says I dont have lupus, but my dermatologist says I do. I'm not quite sure who to believe, especially since my symptoms have been getting steadily worse. I have become so sensitive to light that if I am in a room with flourescent bulbs for too long, I break out in a rash! But I'm sure this is all part of the process and will deal with it the best I can.
Again, thanks for your input, it really helped me feel less alone!
Take care,
Sharon
-- posted by mysharonna
» micklady - Re: mysharonna
In response to message posted by mysharonna:Hello Sharon and Clare, yes we are a great bunch of Lupie Ladies here! And welcome to the world of confusion dealing with doc's and their Dx ! I was lucky and was Dx quickly but seem to share both Lupus and Sjogrens...yup...very confusing. Went on Plaquenil 6 months ago and it has made a major difference for me. this week has been tough, just not feeling well. but that is life! It sure is nice to have you visit here, Karyn is the "Wisdom Women" but she has been fighting a major flare, so hang around and feel free to sit with us, share your struggles, and karyn will visit us soon. Great to hear from you both!
-- posted by micklady
» bellpunch - Re: discoid lupus
HELLO, I'M ALSO NEW TO THIS SITE, I WAS DIAGNOSED WITH DISCOID LUPUS TWO MONTHS AGO, AND I'M REALLY SCARED BECAUSE I DON'T KNOW WHAT TO EXPECT. SO FAR I HAVE LEISONS ON MY SCALP. I HAVE HAD NOSE ULCERS AND SOME MINOR PAIN, I'M VERY TIRED A LOT. FROM WHAT I HAVE READ AND BEEN TOLD IS THAT THIS IS REALLY NO BIG DEAL. I WORK 8 HOURS A DAYPULLING, PUSHING AND LIFTING. SOME MORNINGS I'M STIFF, I ASKED MY DR. COULD THIS BE FROM THE LUPUS
AND HE DOSN'T THINK SO, IF ANYONE ELSE FEELS LIKE
THIS PLEASE LET ME KNOW.
-- posted by bellpunch
» tamara_peters - Re: Re: discoid lupus
In response to message posted by bellpunch:Hi: I don't have any personal experience with Lupus, but Karyn does address Discoid Lupus in this article. Hope you find this helpful. If you have any more questions I will do my best to help you find the answers.
Good luck!
Tamara
-- posted by tamara_peters
» lady75 - Re: discoid lupus
I have discoid lupus as well and have had it for 1 1/2 yrs. Sometimes as well my body aches. And I am wondering myself if the lupus is trying to affect my joints. Sometimes it seems that I can't harley walk or move my body. I didn't mention to my doctor about this because I do not want this illness to get the best of me. But I pray that it's not anything relating to my condition. If this pain continues I will tell my doctor at my next appointment. But I hope thing work out for you .-- posted by lady75
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