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View Full Version : Mystery Rash is Still a Mystery



auntiemern
December 5th, 2012, 12:43 AM
This terrible rash I have been fighting off and on for 4 months is still a mystery. Went to doc today, and they aren't really sure what it is. They have it narrowed down to 3 different things. They are aggressively treating it with high dose prednisone, step down for 9 days, and a cream to put on it. They say they believe it is a bullous rash (yeah gotta look that up) that is directly linked to a severe lupus flare. It showed up at the same time as my last flare. So between the weekend craft fair thing, and 0 hrs of sleep last night, (burning itch that kept me awake all night) fibro is in full swing. Gonna do nothing this evening and probably nothing tomorrow. Got to get over this BS, I have 3 quilts to make for DGK's for Christmas. Hoping to sleep tonight, cuz that will help tremendously.

K. McEuen
December 5th, 2012, 12:53 AM
burning itch ... I sure hope it's not shingles. That can really burn and itch. Feel better soon.

CrazyMtnLady
December 5th, 2012, 12:55 AM
Sorry to hear about your rash. Sure hope the docs can get a handle on it soon. I had a rash once that started on my feet and then moved up my legs and on up my body. The docs called it Migratory something or other... It eventually moved on up and out of my body but it was not pleasant while it was there.

quiltingtrish
December 5th, 2012, 01:20 AM
Burning itching? Allergic to something? I am allergic to Celebrex - drove me literally up the wall and out of my skin! I am sorry you have to deal with this and hope you find some relief sooner rather than later.

Hugs,

lilmouse
December 5th, 2012, 01:21 AM
I so hope you feel better soon, my sister has lupus and is getting little blisters all over her skin and is under lots of medical treatment...lupus and fibro are each rough, but together...you poor thing...keeping you in prayer...with affection and hugs , Susie

auntiemern
December 5th, 2012, 01:57 AM
Nope not shingles. They think it is bullous systemic lupus rash. After looking it up, kind think they may be on to something.
burning itch ... I sure hope it's not shingles. That can really burn and itch. Feel better soon.

SuzyQue
December 5th, 2012, 02:02 AM
Praying that you feel better soon!

Sew Perfect
December 5th, 2012, 02:24 AM
This terrible rash I have been fighting off and on for 4 months is still a mystery. Went to doc today, and they aren't really sure what it is. They have it narrowed down to 3 different things. They are aggressively treating it with high dose prednisone, step down for 9 days, and a cream to put on it. They say they believe it is a bullous rash (yeah gotta look that up) that is directly linked to a severe lupus flare. It showed up at the same time as my last flare. So between the weekend craft fair thing, and 0 hrs of sleep last night, (burning itch that kept me awake all night) fibro is in full swing. Gonna do nothing this evening and probably nothing tomorrow. Got to get over this BS, I have 3 quilts to make for DGK's for Christmas. Hoping to sleep tonight, cuz that will help tremendously.

I too have an auto immune disease , that was causing rashes on my skin. I finally am on something that works great for me...Cetirizine HCL. I too, have a cream..several in fact prescribed to help. Maybe this will help you also.

Musical_Starling
December 5th, 2012, 02:55 AM
Prayers said for you Marilyn! Skin issues are no fun :( I remember doing research on lupus a while back when they thought DH had it (turned out to be rosacea, but the "butterfly" rash had them worried) and it's really nasty stuff! Lupus alone is bad enough, I can't imagine combining it with something else! Worse skin rash I ever had turned out to be contact dermatitis from the antimicrobial soap at the long-term care facility where I worked, and that was bad enough. I can't even imagine how nasty this must be for you! I hope they figure it out soon and you get some relief.

HandsOffItsMine
December 5th, 2012, 02:58 AM
Read about your visit on FB and feel so bad about it 'cause itching can drive you crazy.

I would check out that cream Misa is using, maybe your doctor can call it in for you. Hope you get better soon.

Huggers, Ruby

madampolo
December 5th, 2012, 06:15 AM
I once had a long term skin thing that looked like hives. My doctor had no idea what it was. I went to a dermatologist and he didn't know either. Then, when I had to go back to my normal doctor, she was on vacation. I saw her partner. She took one look at it and said it was a skin fungus, and to bathe in Selsen Blue (not sure about that spelling). That is shampoo for dandruff. Apparently dandruff is a fungal thing. I thought that, well, if it was a fungus, why not try some of that athlete's foot spray. I did, and overnight it went away! For awhile, it tried to come back, but another spray sent it away again. Eventually, it didn't come back. It is amazing what Doctors don't know, especially about skin conditions. I am so sorry that yours is painful like that.

Monique
December 5th, 2012, 09:24 AM
Feel better soon Marilyn.

meemeecyn
December 5th, 2012, 09:34 AM
Yikes! No wonder you aren't able to sleep. Hope you get the treatment that works. Skin conditions are tough to diagnose....The Prednisone should help the itching and hopefully clear up the rash. Take care, Marilyn.
Cynthia

Blondie
December 5th, 2012, 09:40 AM
Marilyn, it does sound like a lupus flare - but how awful. You have been on that pressure cooker long enough - now it's time to cool your jets, girlfriend. Praying for you right this minute. I would hug you but I think it would hurt.
Here's a cyber hug


33271

auntiemern
December 5th, 2012, 03:30 PM
After just one dose of the prednisone, and one application of the cream, I can already tell the difference. I actually was able to sleep last night. Apparently it also helped with the fibro, cuz that pain has diminished significantly. Thank you all for the prayers, hugs, and encouragement.

GuitarGramma
December 5th, 2012, 04:21 PM
Marilyn, I hope you won't mind me offering a thought about fibromyalgia. The late Dr. John Lowe felt that fibromyalgia is a manifestation of low thyroid function. You can google him and browse his EXTENSIVE website, then PM me if you have ay questions. His advice has been invaluable to me with my hypothyroidism.

alliek
December 6th, 2012, 09:41 PM
prayers that the docs are going in the right direction and you get some rest!

bec
December 7th, 2012, 12:46 AM
This is probably unrelated to your problem...I read that if you are on steroids for skin problems etc. for many years and then stop, some people get major withdrawals which include horrible rashes. Some were described as feeling like their skin was on fire.

Many times people find that weird health problems are sometimes brought on by the medications that they're taking or have taken. It could even be the combinations of medicines. As I said...probably not your problem, but our bodies change and sometimes our reactions to medicines change, too.

Examples -
I have a couple of friends that were having health issues that baffled their doctors. One had become so weak and lethargic that she could hardly walk to her car. Her doctor couldn't figure it out. She questioned the medications that she was on, but he said that they couldn't be causing her problem. She accidentally found out that it was one of her medications. She had run out of pills and it was a few days before she was able to get any more. She noticed after several days that her she was feeling better so she stopped taking the pill. She no longer has that problem.

Another friend had some major breathing problems and she asked her doctor if it could be one of her medicines. He said not. She went to a different doctor to try to find answers and found out that she was on too many medicines. He took her off of some of her prescriptions and adjusted everything.
After months of debilitating problems, both of my friends are feeling much better now. I say all of this because I think it doesn't hurt to question doctors and to get second opinions, if necessary. Hope you get some answers and are feeling better soon. Hugs.