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Discussion Starter · #1 ·
Hello Friends,

I am wondering how your Dr, or Dermy treats your Malar Rash, and Discoid Lesions?

I finally saw a Dermy two days ago. He didn't seem very learned about Lupus rashes at all. First, he thought my malar rash was Roseacea. Then he left the room, and talked to my Rheumy on the phone. He came back to my room and told me..I have severe lupus, and most people with lupus only need to take Plaquenil. He told me I was on a very high dose of Cellcept.
I thought that remark strange. My Rheumy hasn't even told me that. Of course..I knew this just by my treatment and symptoms.

He then told me I have both Roseacea, and a terrible Malar Rash, and also have a discoid lesion on my shoulder.

He proceeded to give me a steroid lotion for my face, He wants me to use it and return in 6 weeks.

Fellow lupies..When you have your malar rash..do you get actual scabs on your face? I have scabs on my face.

I am really confused. The longer I have lupus the worse my facial rash gets. I am on Plaquenil, Cellcept and Prednisone.

I forgot to ask the Dermy why my skin sloughs off when I towel dry. I will ask him that question when I next see him. Also..why my skin sheds so badly on the mattress..I stopped using a loofah, and I still peel and shed.

Thank you, everyone for all your replies and help to me..as always.

Love,
Sandy
 

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(((Sandy)))

I am trying to figure out the statements your dermy said:scratch:. He cleary doesn't know to much about lupus.

My malar rash doesn't get scabs.

Maybe the steroid cream will clear up your scabs?

My rhumey just looks at my face and either says I can see the rash this time, your rash looks better or are you wearing makeup. Which I always reply no I am not wearing makeup.;) I know not to wear makeup when I go see him. Plus I usually sweat it off in no time.:hehe: So what is the use of applying makeup?:p

Sorry got off the subject, Sandy.:blush: If you are not satisfied with this dermy maybe try another one? Did your rhumey recommend this dermy?

I hope you get to feeling better.:hug:

Love,
Lyn
 

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Discussion Starter · #3 ·
Hi Lyn,

Thank you for replying to my post dear friend.

The dermy my Rheumy wanted me to see is on vacation..so, I had to see this dr. The dermy was going to do a biopsy until he spoke to my Rheumy.

My facial scabs are small. They are in the typical lupus pattern.
over my cheeks to my temples. Mostly, I can feel the rash..but, yes, I definetly small scabs where the rash is healing. The lotion is helping.
It is called Desonide.

I stay out of the sun as much a possible. Only going out to do the absolute necessary things..dr, apts, mail box, grocery shopping and such. I always wear and sun block. The dermy wants me to wear a total block also. Something with Titanium or Zinc Oxide in it. He said Zinc Oxide is now transparent. That was good news..:)

I am just confused as to why I have this rash most of the time now? I am wondering if..I am undertreated. I still feel bad most of the time also, inspite of all the meds I am taking.

This rash thing has been steadily worsening over time. This time I developed a raised rash and lesions..along with the red coloring..I am just wondering if other's have actual lesions other than the discoid lesions?

Thank You,
Sandy
 

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It is possible to have both rosacea and a lupus malar rash at the same time... but I do find his behavior and statements to you a bit off too.

Most typically there is no specific treatment for the malar rash as far as I am aware, steriod cream on the skin (especially long term) can do more harm than good and is usually avoided when possible. Treatment for discoid and/or subacute cutaneous lupus may be a bit different and hopefully Clare will be along to write to you about that soon as she is the skin expert on the site no doubt. I do know that she has had a good response with other additional meds link quinacrine/mepacrine in particular though.

My malar rash does not cause any scarring or scabbing either. You may have something beyond a malar rash going on there - & I would also recommend another opinion and possibly inquiring if there is an expert or specialized dermy that you could see that may be more familiar with the various sorts of skin lupus.

Good luck!
 

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Discussion Starter · #5 ·
Thank Maia,


I did a bit of research and read that a Malar rash can be scaly or flat. I would describe my rash a scaly..That is perhaps a better description of my rash, that saying it has scabs.

It is worsening over time, inspite of treatment. I am curious as to why, and will ask my Rheumy when I see him again.

Thank you, for all your input. Maybe, I will request the Dr, my Rheumy wanted me to see in the first place..next visit.

Sandy
 

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Hi Sandy,

I don't know much about this but do know that sometimes adding mepacrine (or quinacrine) to the mix of meds (on top of plaquenil) can be very beneficial for skin manifestations of lupus.

I know that it is not widely available everywhere and believe it needs to be made up by a compounding pharmacy but it would certainly be worth looking into.

Katharine
 

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Oh my! My Rheumy prescribes to me all the medication I need in regards to Lupus since they monitor the disease, it is easier to have one than two monitoring the same issue.

My experience with steroid creams was not a good one. I had originally gone to a doctor that prescribed me the steroid cream on my first rash I had received and didn't know it was lupus at that time. I used it sparingly like they said to do. However, the cream thinned my skin and I have a nasty area on my arm that has never healed since day one 13 years ago. It is constantly trying to grow new skin in that area that sheds dead skin daily. Also, the cream seemed to create the scabbing, since I don't have it in any other areas I didn't use it on.

Therefore, I use oral medications, such as Dapsone to lighten my flares and the red spots go completely away in most areas, without scabbing.

Just wanted to give you a reminder on knowing your medications...and their side affects. Not saying this happens to everyone and not to scare ya, but just thought I'd share. I wish you the best of luck in finding your solution!

Leah:)
 

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Hello nichols and welcome :)

There are many different things that can be done to try and "treat" a malar rash even if it will perhaps remain variable. Mine is very much under control since my disease activity has been properly treated.

It would be easier to help and answer your question if you posted an introductory thread and told us what medication you are on etc. then we can reply more for you and your situation.

Katharine
 

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Dear Sage Hen,

I am new here and yet to be diagnosed (I'll see the rheumy in 11 days,) but I think I can relate to what you're saying about your skin rubbing off (although I don't have a confirmed malar rash.) I've had many versions of this over the last 10 years, at least, and every doctor seems to have their own name for them...Severe Errosive Lichen Planus (biopsied,) Eczema, a lot of "I don't know...I've never seen that before"s and finally my rheumy's hinted around my possibly having Lupus along with the other autoimmune diseases.

I can relate, though, although I don't know what to suggest, or whom, for treating it. Everyone I've met has shaken their heads, looking all the more confused as the autoimmunes pick up number and speed--the more the immune system is in hyper-drive, the faster everything's accelerated and the more unpredictably new things come on. My skin follows this same pattern.

But, speaking of skin...I keep kidding to myself that I need a little Dust Buster just to keep by the bed because despite all the skin conditioning I do my skin rubs off into what I call my "mummy dust." I've been told that my skin's normal functions are intercepted by the out of whack immune system and the cells develop some, but are never allowed to mature--it's called "liquifactive degeneration." What results can be more ghoulish depending on the body part where it occurs. When main body parts, arms, legs, that's when I get my mummy dust (honestly, I've tried going through 3 towels to try to stop "shedding," but soon realize my skin is getting sore and there's no end in sight : ) Thankfully, that's where it doesn't hurt too much. Every inch of skin or mucous membrane in my mouth sheds, usually 2-3 times/week. I wake to this odd feeling in my mouth and soon run my tongue over my cheek, which then has a dry, thick, insensitive feel...it has edges to it, too. At first I was a bit worried about it, esp. when pieces of flesh were coming out that were the size of a large postage stamp or larger or if the pieces came from my tongue. Over time I've come not to worry about these as they rarely hurt much, and when they do, I try to drink milk with hopes of soothing and smoothing things. I've one area that the highest specialists in the specialty have considered "history" because the skin loss and tissue tearing has gone on for so long that everything is mostly scarred and strictured. The only part that really concerns me is beneath my "chest"--it's dangerously way too ample for the disc disease and neuro-damage already present, but the skin beneath and on my rib cage sheds every week to two weeks: first it get's "dusty"; then "plasmy"--sticky, not oily; then itchy...which leads to swaths the size of two hands together of raw flesh with slightly raised borders where normal flesh occasionally is--this I have to ensure doesn't get infected.

Anything I learn or try I'll stop back here and let you know what it is and how it's working. (In the past I've been on 2 courses of Plaquenil, no dice...that's why the rheumy and I are hoping to try biologics, at least for the RA and Fibro, bare minimum. I've also been on steroid creams, maybe they wern't high enough? And currently I take some prednisone with my other RA meds.)

Take Care, Sage Hen
 

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Hiya.. just to let you know that a caribbean consultant recommends the 'ocean potion' sun products.. but I use a variety of factor 50, all seem good, some lighter than others, some like my skin more..just a question of testing it all out and time.. anyway ocean potion now do a pot of zinc oxide factor 45 which is a totally clear product, it is available online too.. hope you find something that helps.
Claire X
 
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