Discoid Lupus

Discoid Lupus

Posted In: 17 Replies
  • Posted By: Anonymous
  • June 7, 2006
  • 08:13 AM

Hello, this is my first attempt at sharing. I am 51 yrs old and am a professional musician here in the midwest. www.congajazz.com
In April of 04 I was diagosed w/ discoid lupus, it was biopsyed, (sp) and came back positive.

I now have lessions on my face scalp and ears, that itch to no end and is very distracting to my craft and my job. I don't know what now to do.

, no where else, but now are distrubing to me for I have to where a dermal makeup when I am performing or in the public . I am quite parinoid at this point, for I have seen several dr's and mostly interns at hosp, that have no clue, for I have no insurance now.

they have prescibed all the creams etc. and the next step is steroids I guess, I also have hair loss. I am, if you check my site is and damitt was a pretty suave guy, I still think so, but, I really need help w/ my facial. I wish I had a before and after pix, pretty bad to me.

I think and know, the dr's woukd just look and say, yeap, that's what you have and is really frustrating when they don't even lay a hand to really look at the problem. The hospital program is good for that, Wishard, Indpls, the only place I can get asistance.

I would think their is something that can minimize this conditon........please help. Thank You Larry Calland.

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17 Replies:

  • Hello LarryI am sorry to hear you are so badly affected by discoid lupus and that it has gone on so long without effective treatment. I know what it's like because I have another sort of skin lupus plus a couple of systemic symptoms arthritis and fatigue.I'm also sorry about the insurance problem but have no helpful suggestions about that because I am not in the USA. However information about the treatment of skin lupus might help you to get the best from the situation.The first line oral treatment for skin lupus is the antimalarial Plaquenil, hydroxychloroquine sulphate, with steroid creams as first aid from time to time as needed and strict avoidance of UV light aka sunshine usually although some people are sensitive to fluorescent and halogen.This medicine is disease modulating - it will help stop the disease progressing both existing symptoms and new ones of a more systemic nature. It is effective in the majority of cases of discoid. It is ' benign' in the sense that there are very few side effects and they can be tested for before any damage is done and it's generally very well tolerated.When it isn't enough, another antimalarial can be added, called Quinacrine in the USA, Mepacrine in the UK. It is chemically different from Plaquenil and they work together synergistically each enhancing the effects of the other.Plaquenil replaced Quinacrine on the market as malaria prophylaxis so it can only be obtained from a compounding pharmacy.It's important to get tested from time to time for any signs of systemic disease developing, but at least have urine tests for protein that could indicate kidney disease and keep an eye out for worsening as in new or worsening joint aches and pains, increasing fatigue, lesions spreading to body, lung problems like pleurisy, and anemia.I use Revlon Colorstay make up as the best readily available camouflage, a great job can be done with the more specialist camouflage make ups plus Colorstay. Try to get professional stage make up advice for appearances under bright lights.For example a camouflage make up can make all facial skin of even tone thus giving a mask like effect. The natural variations in tone need to be added- higher colour on cheeks maybe, and shading elsewhere as needed.All the best and the best of luckEsmee
    Anonymous 42789 Replies Flag this Response
  • Larry: I am a 60 year old midwestern gal that discovered she had discoid lupus 27 years ago...I basically used cream to curtail any breakouts on my skin and stayed out of the sun as much as I could, and got along fairly well. About 5 years ago Mayo Clinic discovered that I had early onset of systemic lupus. About the last 3 years I have been having facial breakouts and am currently going through my second bout in 1 month. I use Elidel (sp?) on my face twice, use Cedifil soap/lotion, sunscreen and then makeup each day. However, I seem to notice the sunscreen sometimes irrates it and swelling and itching takes place. When I had my first outbreak this is what I did....I went 1 week with using only cool water on my face and Cetifil lotion to keep my skin from drying up.....no makeup at all....it cleared up beautifully and was so soft. I had gone 2 years without a breakout on my face, but now it is spreading down my neck and blisters are on my jaw bones and cheeks....I have been on prednizone twice this month and the first time it cleared up, but this second time it didn't work as well...healing is taking longer. I am fortunate that I have insurance so I see a dermitologist in Iowa City, but since I have lupus and Sjourn's Syndrom and thyroid, he says my case is complicated....but I consider myself lucky as I have a Sis who just got skin cancer and then shingles on top of that and had to have her face all cut up ...Larry...this is not easy to deal with and I do believe Stress has a lot to do with outbreaks.....I feel so bad that you cannot see a dr. regularly and I urge you to check out all the clinics in your area or organizations that might be able to help you....
    Anonymous 42789 Replies Flag this Response
  • Mary,I was recently prescribed Elidel for the treatment of my dle lesions. The product indicates that it is primarily used to treat eczema. I was just curious to know how well (if at all) it has worked for you. I am experiencing extreme flare ups on my face and I was placed on plaquenil as well. I don't seem to be experiencing any serious side effects, but I think it may be impacting my appetite.
    Anonymous 42789 Replies
    • September 17, 2006
    • 04:48 AM
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  • larry-i am a mary kay sales director and if you go to my website at www.marykay.com/pjpetrocelli. look up a product called extra emollient night cream. this is what you should use. you can use this on your entire body and it is also very healing! one of my customers had severe issues w/skin - had a very expensive tube of medicine. i asked her to try this for one week and not use her rx. the horrible skin lesions she had (kind of scaby) disappeared and her skin continued to get softer. there is a story behind the formulation of this product which i KNOW will help heal and preserve your skin. now of course you cannot hold me to this statement -because there are always those exceptions. the skin care can also help you as well as the visably fit body lotion. i use it in conuction w/the extra emmollient night cream. also our foundation or concealerwill cover your areas that need help . it is none transferable and will protect your skin. the day solution alsohelps and has spf 25. look at info for the miracle set. i can also help you customize what will work with you since you have sensitive skin issues. my son developed a strain of kombucha mushroom tea. he calls is a powerful medicinal potient. as your tea furmints (sp?) it is naturally effervessient and tangy like a cider. a very powerful anti oxident. so like the anti-age creams fix skin --this fixes the organs and internal stuff to get rid of free radicals and reduce aging internally. you can look it up, andi also have a web sitelet me know if you want to talk further i can tell you more if you are interested. w/o ins is also something i a familar with. go to ppa.org and there if you need medicine, can fill out a form and the pharmacudical company can send you meds for free if you qualify. i do and get that assistancestretch, get massage therapy
    Anonymous 42789 Replies
    • January 26, 2007
    • 02:52 AM
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  • Hello from a newbie!Hi out there. I wanted to introduce myself to everyone. I’ve been searching the web for info about lupus and found this board. I’ve never thought about joining a board before, but after reading through some posts, I’m happy I did. I just want to say thanks to everyone for the support you offer here
    justdafacts25 5 Replies
    • February 4, 2007
    • 02:01 AM
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  • I found this site information on Lupus treatment. I have Lupus like symptoms and I have being following this advice. Some of it makes so much sense to me. I was able to connect the dots.I hope it works for you all.Be Well.
    Anonymous 42789 Replies
    • February 4, 2007
    • 03:01 AM
    • 0
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  • Thanks for the Support.I just joined this board and have been reading through a bunch of posts. I wanted to tell you all how much I appreciate all the support you give one another. I think it will be really helpful for me to read what other people are going through. So, thanks! i will have some info for every 1 soon
    justdafacts25 5 Replies
    • February 4, 2007
    • 03:57 AM
    • 0
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  • Thanks for the Support.I just joined this board and have been reading through a bunch of posts. I wanted to tell you all how much I appreciate all the support you give one another. I think it will be really helpful for me to read what other people are going through. So, thanks! i will have some info for every 1 soon http://users.mrbean.net.au/~wlast/lupus.htmlSorry, I forgot the link.
    Anonymous 42789 Replies
    • February 4, 2007
    • 04:13 AM
    • 0
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  • Great CONDITION videoI found this site called realhealth.tv which has a great video. Even though I am a new member, I think everyone here would really like watching this film b/c it was really nice hearing and watching someone talk about their difficulties and how they cope. I wanted to share this with everyone here, hoping it would help you guys too. Here's the link http://www.realhealth.tv/site.html?goto=31&vid=34&vo=0. Keep strong everyone!
    justdafacts25 5 Replies
    • February 4, 2007
    • 04:19 AM
    • 0
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  • Well, I have had problems with really bad looking itching red rashes on my arms, and tried a few different things. My mom has rosacea and uses a cream for it, so I just tried it, and it works on my arms! It is called Dermarest advanced redness treatment, and it says Rosacea at the top. I hope it will help you!
    Anonymous 42789 Replies Flag this Response
  • These products really changed my life, before I was really embarrassed of how I look I had pimples all over my face and even starting to develop wrinkles, not even the biggest geek from college wanted to go out with me, until I've found the Alsaskin site, my face started taking shape of a normal human face and after a while the boy I had a crush asked me out on a date. Alsaskin.com is not the greatest web site but the description of skin types and related products has enabled me to identify the best products for my skin. You should look there because you will defiantly find something you need. It worked wonders for me. The fact that the products are all natural (check the ingredients – very good and well researched!) gives me peace of mind about what I am using daily on my skin and you can't really find anything that would not be useful. Try it fast...it's worth it. Can't wait to read your replies about it
    Jordan 1 Replies Flag this Response
  • I have had lupus for about 8 years now and I have taken all the prescibed drugs but nothing seems to work. I have large spots of hair and a rash that occurs on my face and chest. The joint pain and fatigue at times becomes more than I can take I seen a few dermatologist but they dont seem to be of much help. Lately I have got somewhat depressed in reference to my condition. If anyone know of something that can give me at least a little relief I would be most thankful
    Anonymous 42789 Replies
    • January 4, 2008
    • 02:50 PM
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  • Yes, I have found something that has helped me as I have Lupus/mixed connective tissue disease (diagnosed in 2005). I chose not to go the tradtional drug route as my aunt did and is not doing well at all due to side effects of all the drugs. I've gone to Mexico and changed my diet and tried various natural things. I have come across some helpful ideas and products that allow me to be pretty much free of joint pain, have more energy, and most of the rashes are gone without having to go to Mexixo anymore. You can email me at rosedr124-ny@yahoo.com if you want to know any other information. Hope you improve and don't give up.
    maxgxl 2 Replies
    • January 5, 2008
    • 00:53 AM
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  • I was diagnoised with discoid lupus in 1998, I had lesions on my face, scalp and even affected my lower eyelid. I was treated with injections of steroids and have been tested for systemic lupus and tests have been negative. The lesions on my face have cleared but the hair loss seems to be getting worse. The dermatologist has give me topical cortisteroids but it does not seem to working to get the hair to grow back and it seems like I am tired a lot. I have been thinking about going to see a rhemuatolgist but hesistant on him/her really helping. Any suggestions?
    Anonymous 42789 Replies
    • January 31, 2009
    • 02:38 AM
    • 0
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  • Hello to all!I just found out that I have Discoid Lupus in Nov 2008. I was very upset:mad: about it because I didn't know anything about Lupus. How did I get it ? Where did it come from? These were question that I often asked myself ,sometimes still do. It started in Sept 2008, after a surgery I had. I broke out with a rash in between my eye brows. Over the next few days it was on my chest, then stomach, and back. Five Dr's couldn't tell me what was causing these rashes to appear on my body. First I was told that it was an allergic reaction to the anesthetic meds giving during surgery.. NO..then I was told it was the antibionic that I was taking..No.. the other three said they didn't know.:confused:I went to a dermatologist who did a biopsy, it came back as a large pimple but in medical term. The Dr looked at me and told me this is no pimple,then explained to me that she was going to do another biopsy and check for lupus. See my butterfly rash was upside down in my eyebrow and I think that's why noone really couldn't tell what was going on, "so let others know that the rash can come many different ways". -----Well the biopsy came back positive. What I've learned from not knowing what was happening to me, is that stress was making it worst. I was stressed for two months because when five Dr's told me that they didn't know what was wrong and I didn't have an idea I got scared I thought I was dying. I wish I could show you all the pictures that I have of my self. :(Now I see a rheumetologist and I take Hydroxychloroquine it helps alot with the breakouts but my joint pain is beginning to come more out of control. I feel much better now then I did before,with much FAITH, and Knowing where all my help and strenght comes from I'm truly Blessed.I will not let this get the best of me.:D
    Weakback 1 Replies Flag this Response
  • Hi to all of you who have discoid lupus.My is Sandra and I was diagnosed with disciod lupus 2 yrs ago. The treatment that has worked for me is being treated with Plaquenil which I get from a Dermatologist along with Elidel cream. I do have to see my eye doctor every 6 months because the plaquenil can cause eye problems, also I have blood work every 6 months to make sure no other problems come up. I hope this info might help you, please talk to your Doctors about the meds that I take, they have really worked for me and it has been so nice to look in the mirror and not see the ugly red scalley,itchy sores and now I am able to ware light makeup that doesn't look like a mask.
    Anonymous 42789 Replies Flag this Response
  • Hi - my son was 4 when he developed a rash on his left cheek with blisters and redness. I was told it was a staph infection so we treated with antibiotics and allowed time to heal it. After a few months, he continued to break out on his cheek only with blisters and redness. This started happening every month to two months. He is now 5. Pediatrician and a few Dermatologists could not diagnose this. Finally another dermatologist ran an ana blood test and verbally diagnosed as disocoid lupus. Next a Rheumatologist saw my son and ran additional bloodwork, other than the ana test coming back positive, all other tests came back normal. She dismissed him. My son wears 70 sunscreen every day, rain or shine, however, he still gets these rashes every few months. I have not done a biopsy because the dr's recommend not to since the rash is on his face, however, I feel that this is something and I can't ignore that it will just go away. Does a skin biopsy confirm discoid lupus 100%? My next step is going back to the derm but I feel like I am getting the run around. Any similar stories? Thanks in advance.
    Anonymous 42789 Replies Flag this Response
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