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Old 06-27-2003, 12:56 PM   #1
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EdSmith32 HB User
Unhappy Help for a first time poster, need answers on a skin condition....

hey guys im a first time poster, i thought that i would post here because i do not know what i have, doctors have given me some ideas but nothing has worked, i was hoping somebody here might know what im going through, i will start from the beginning, and have patience because i have gone through a lot of weird things with my skin, around last february i noticed that the area around my nose was very dry, i attributed this to the really cold weather, and didnt think much of it, it was flaky, and sometimes red, but the redness would go away eventually, then in late november, i got out of the shower one day, and i noticed a raised itchy rash forming symetrically on both of my arms, the next month or so it appeared all over me, but always symettrical, it appeared on both of my rib cages in a small red dot formation, slightly itchy but not bad, on the top of my thumbs, both hands, my biceps, on my thighs, my calves, and from there i used hydrocortisone to control the itching, my skin had an overall "weird feeling" to it, even the areas not affected by the rash tended to be sensitive, bed creases would remain in my skin longer than normal etc. The next stage was suprising, the skin began to go from rash, to very scaly and dry, almost like broken skin, it was the worst on my thighs, i initially thought it was maybe scabies but that idea was dismissed by two different doctors, i treated the dry scaly skin with eucerin and it eventually got better and went away(when i say went away, not completely, to this day my skin still is a little weird, the bed creases still are there, and when i get out of the shower, my knees are bright red, my knuckels, and my calves are a little spotty) but now on to the big problem i have, while my skin turned scaly, i cant pin point the exact day, but i began to get a red face, and i noticed it was a butterfly pattern, it was not itchy, there was nothign else but redness, i didnt really even mind it in the beginning, i forgot about it at length, because i assumed it was related to the rash, and would eventually go away, but it remained, never getting worse, but never getting better, just a fine redness, some people didnt even notice, i went to a dermatoligist in mid march, and he dismissed it as a dry skin condition, the area on my nose and the cheek area right next to the nose are afeected, they are clogged with blackheads, and my pores have opened up more, the dermatologist felt that the blackheads could explain the redness and partial swelling of the nose, i only have blackheads in the butterfly area, i was given a benzoyl craem to control the blackheads, and a moisturrizer to put on afterwards as to not dry out my skin, i used it for abou 3 months, with no success, the moisturrizer actually seemed to make me break out, by this time i was very emotionally upset, i actually have OCD as well so you can imagine what was going through my mind "what do i have" "how can i get rid of it" "is it serious", well i just recently had another follow up with my doctor, and i have another dermatoligist apppointment, my doctor talked about lupus, but i have none of the other symptoms aside from the rash, that doesnt look like lupus anyways, and my blood tests were perfect, as for rosacea, i have never had a problem with blushing, i dont even think i have ever blushed, and im not fair skinned, and i didnt think blackheads were involved with rosacea, my doctor said i might have seborrheic dermatitis, so ive been using medicated selsun blue for about a week and a half, on my scalp and my face, i know it says to use for two weeks so i shouldnt jump to conclusions, but it has yet to help me, and lately i have been getting some whitheads, and pimples in the area affected by the redness, i think this is due to the blackheads clogging the pores, ive used pore strips once and a while, but the blackheads just come back the following day or two, its a tough situation, basically i just wanted to get someone elses opinion, have you ever heard of a butterfly rash with clogged blackheads? one that has nothing to do with either lupus, rosacea, or seborrheic dermatitis? any suggestions on how to keep those blackheads away effectively? and could the redness just be due to the blackheads? thankyou for any information you can give me, i wanted to post this to just partially get it off my chest, i have been going through a lot, i know this is very trivial compared to a lot of things, but with my mentality it seems like little things do a lot to me, thankyou and i look forward to your replys

 
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Old 06-27-2003, 01:15 PM   #2
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Poor you, Ed! The skin can be so frustrating, because you can't hide your problem, and that only makes it worse. You keep trying different things and jumping from one cure to another. When you visit the dermatologist again, pick the area that is most bothersome to you (it sounds like the face) and have him/her concentrate on that area until it's under control, TO YOUR SATISFACTION!! Follow the treatment exactly and for as long as they say, with no variations. Then move ******d to other areas. No one wants some incurable disease, but you should have a biopsy taken to rule out lupus, especially since you seem to have a widespread problem. Be pushy, be bossy, be demanding, but don't be dismissed! Good luck to you.

 
Old 06-27-2003, 07:36 PM   #3
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bgirl HB User
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I agree strongly with the last message,get another opinion and push for a biopsy,don't take no for an answer.The only time I've heard of a butterfly pattern on the face is when it was associated with lupus,and considering ALL of the other things going on simultaneously ......I don't know , just get some more opinions.In the mean time jojoba oil and vitamin e oil(14,000 i.u.) are your best bet for treating your skin.They are non-irritating,and are full of many benefits for the skin.Check out the posting by ccmakes3 (I think it's on page 1 or pg.2),"how do I get rid of skin redness?" I wrote to her about jojoba oil,where it is from, what it does for the skin,etc.....I think you might find it interesting.I wish you good luck !!!!!!!!!!!Keep us posted!!!!!!!

 
Old 06-27-2003, 10:11 PM   #4
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I, too, would push for more extensive testing for lupus. Good luck!

 
Old 06-27-2003, 11:06 PM   #5
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There are two types of lupus - Discoid Lupus Erthematosus (DLE), and Systemic Lupus Erthematosus (SLE). You have symptoms of both, as it is common for a person to develop the second one after having the first.

The first one - DLE - is a disorder in which itchy, red, scaly patches develop, especially on the face and on parts of the body exposed to sunlight. It may subside and recur with different degrees of severity. In some cases, the rash can disappear but leaves behind a scarred area in which the skin is thin and discolored. I believe this is the one you started out with, and surprisingly you treated it with what a doctor would give you - corticosteriod cream. But as you have found out, it does not go completely away. This particular lupus does not have the butterfly rash, but the second one (SLE) does, which some people develop after having the first. I think this may be what happened to you. It is stated that -
"1 in 10 people with DLE goes on to develop a related but more serious disorder called Systemic Lupus Erythematosus. This second one affects many parts of the body, including lungs, kidneys, and joints."

People who have SLE may have widely varying symptoms. Some have mild symptoms that appear gradually, others are more severe and develop quickly. Since the symptoms of SLE are so varied, they often are dismissed by the patient. It is imperative that if your doctor wants to test you that you let him. He can do a simple blood test and also a biopsy of your skin. Because SLE can affect organs, especially the kidneys which can lead to kidney failure, you need to let your doctor do tests so if you indeed have this, he can start you on a course of treatment to prevent it from getting worse.

Please get checked, this is not something to let go, especially since the testing is a simple blood test and very easily done.

Let us know what he finds, ok?


 
Old 06-28-2003, 08:00 PM   #6
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Ed, I just reread a part of your post where you said that you didn't think you had lupus because your blood tests came out perfect. They would, because they weren't looking for it. To check for lupus, they do a blood test which looks for certain antibodies associated with the disorder, which would not necessarily show up in a routine blood work-up. Your doctor would have to request it. Please make us all feel better and get checked just for the heck of it, ok? And let us know how you are.

 
Old 06-29-2003, 12:00 PM   #7
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hey guys, thankyou so much for all the replys, i really appreciate it, as for the blood test, im gonna get one as soon as possible, im gonna call my doctor tomorrow, hopefully i can get one soon, i talked to him on the phone earlier too, and he feels pretty confident that i dont have it, although the blood test was not done to check for lupus, the first thing he mentioned was that my kidneys and other organs were fine, and their were no bumps in the road, and from looking at me, and hearing how i dont have any other symptoms, he felt pretty good about it not being lupus, but i will certainly make sure by getting a specific blood test, i will let you know how it turns out, im going to try to get some of that jojoba oil too, i imagine its only available online? for now i bought some vitamin E gel, and i really like it, it hasnt improved the redness all that much, but it has made my skin feel normal, its not dry, its not oily, its just SKIN, and i think if i continue to use it, my skin will get less irritated, and it actually helps blemishes too, so even better, thankyou for the recommendation, i will let you guys know how the blood test turns out, im confident that everything will be okay

 
Old 06-29-2003, 12:06 PM   #8
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bgirl HB User
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Jojoba oil can be bought in ANY health food,etc....type of store,or vitamin shop,you do not need to order online.As for the vitamin E gel,it is probably o.k.,but watch out for other unnessesary ingredents,pure vitamin E is better(14,000 I.U.).Good luck!!!!!

 
Old 07-07-2003, 09:07 AM   #9
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scentless_apprentice11 HB User
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hi Ed,

i know it's prolly not it....but are you sure it's not a bad case of poor old eczema? i've suffered with it for 23 yrs, on the point of hospitalisation etc. and some of your skin conditions sound similar to mine.

i found for really hydrating the skin...to stop itchy and flaky...macadamia oil. and lots of it! straight onto the skin, you can get it from most pharmacies.

also oatmeal baths, to calm the skin.

also make sure you're not getting over heated when asleep etc - that was an instant trigger for my skin...same with boiling hot water!

hope this helps!
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"smile sunshine!"

 
Old 07-09-2003, 02:56 AM   #10
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keep us posted. i seem to have the exact same problem. the area an inch under my eyes going towards my ear has this skin which has super large pores with blackheads. and it gets REALLY oily. this skin is also very prone to scarring. i can not figure out what it is.

 
Old 07-09-2003, 06:25 AM   #11
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EdSmith32 HB User
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hey guys, i have a derm appointment on sunday, im yet to have that blood test, my doctor was on vacation the last 2 weeks, i highly doubt i have lupus, 2 doctors have told me that they dont think i have it, and frankly, i have only one of the symptoms, the rash, i have come to realize that the skin is the weirdest thing, you cant look up symptoms online and over the internet, cause you will start assuming you have things, and drive yourself crazy, people have had skin disorders, thousands upon thousands of them, that never get solved, just heal up on their own, the skin is prone to so many different types of things, where as if i type in my symptoms, all i get is lupus, rosacea, and seb derm, i would say if i had any it would be seb derm, but the selsun blue i used didnt heal anything and i used it for 2 weeks, frankly i have been driving myself crazy with this, you can hardly even see the redness in my face, OCD doesnt help,and GTI, i will keep you posted, and you do the same for me, my pores are definitely enflamed, i was worried that they would stay that way, but i guess when your pores are oily, and producing more sebum, they get like twice as big as they normally are, so once the oil production slows down, the pores will shrink, other people have naturally large pores, but if your face is oily, im banking on that causing your enlarged pores, and dont worry, no one notices it, i got worried that i didtn look good, then realized that no one notices pores, also how old are you GTI? im 20, and i guess tahts the age where your skin starts doing some weird things, i suppose i could just be producing a lot of sebum, that could cause the redness, i have been using clearasil blackhead remover, which doesnt keep the blackheads away for long, but it works well, i wll keep you guys updated, and i will get a blood test just in case, i just dotn know if i will even know what this is, hopefully it will just go away.

 
Old 07-09-2003, 08:55 AM   #12
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u know what? i kinda hope its lupus i have. as crazy as it sounds. my skin has been real crappy around the butterfly area. i don't know what to do with it. it seems slightly raised and the pores are huge. like i said its real oily. Along with this i've been losing weight uncontrollably. I eat like crazy to no avail. It almost seems like something's eating me from inside.
i'm also experiencing hairloss and thinning lately. I really feel like crap today. Honestly, I don't know how long i can take this shiat anymore.

 
Old 08-08-2003, 02:08 PM   #13
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EdSmith32 HB User
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***UPDATE***
Hey guys sorry i havent posted in so long, i went to the dermatologist on the 11th of july, i got all the proper blood tests done, the antibody and double stranded DNA tests, for lupus, the doctor was 99 percent sure that wasnt the case but we did them just to be sure, well i got the results a few days ago and i do not have Lupus, which i am very happy about, i had been on benzy peroxide twice daily before that appointment, because this derm really feels this is just an acne problem, a weird one at that, its mostly whiteheads and blackheads, with the occasional pimple in the t zone, i have blackheads in my forehead, and my chin breaks out a bit, but ive always had a problem in that area, i asked him if it could be rosacea, he said thats a possibility but didnt deem it likely, due to the blackheads and whiteheads, and ive never really flushed in my life, nor does this condition ever worsen with anything, stays teh same, the redness seems to be due to the blackheads and inflamed pores, when you look at me far away its just a light redness, but close up you can see patches of regular skin, with redness around the pores. This isnt a very ugly form of acne, which im thankful for, most of the time i look fine, just the redness, and the pimples i do get are hidden by this redness. Anyways, since this benzyl peroxide wasnt doing the trick, i got the 0.25 percent tretinoin cream, to use once a night, at bed time, and apply all over in a thin layer, pea sized, you know the drill. He also wanted me to use the peroxide in the morning, i know some people cant handle all the medication, but my skin is doing well, im actually on the benzyl peroxide twice daily now, because my skin is through the initial PEELING phase which was very tough, but i made it, and my skin seems to be adjusted to the tretinoin, so i can use the peroxide twice daily, as instructed by my derm, so far the condition seems to have gotten a LITTLE better, my pores seem to be a bit smaller, and the redness seems to be a little lighter, i say this because now i can actually see some of the zits on my nose, which is a good sign because that means they are now redder than the surrounding area. I have been breaking out at about a normal rate for me, i havent had a HUGE breakout that many people experience with this drug, but the breakouts could still be due to it, the pimples i do get come and get dried out quick, so it seems like the drug is working, its just hard to see how its going to get rid of the redness, i suppose just keep using it, i know it takes some people up to 3 months to see significant results, others use it all the time just to maintain a good complexion, i will update you again soon.

 
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