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auntiemern
March 1st, 2013, 12:53 PM
As most of you know I went to Dermatologist Monday, and had the biopsies done. He took me off the steroids because he wanted me to be off of them for 2 weeks and then get blood work done. By Tues evening I started breaking out. By Wednesday evening, I was broke out on my entire upper body. There was not an area from my groin to my head that did not have the rash and blisters. Needless to say I was beyond miserable. Plus I still had my toe in agony. So yesterday morning I called the doc, and got in to see him yesterday. It was the worst (on me) that he had seen.(actually had 3 different docs to look at it) He said he didn't expect me to flare that quickly or that badly. He called the patholgist, and got a verbal report. Bulous lupus rash. That is the first thing I was treated for, but the original biopsy, was not checked for that. Apparently, the current med (plaquenil) in my case which is rare, is not enough to keep it under check. So he put me back on the prednisone (steroid), high dose, stepping down for the next month, til the blood work comes back, then he will add another med that in combination should keep it under control. He also gave me a pill to help with the intense itching. So hopefully there is an end in sight. At least to keep me from breaking out so bad. Kinda glad that the lupus was just attacking my skin and not one of my major organs. That is just about the gist of it. The rash is fading and the itch pill is working. Right now I am feeling kinda WooHoo for me :)

GuitarGramma
March 1st, 2013, 12:57 PM
Oh, Marilyn, you must be so relieved to finally have a diagnosis. And you're right, if you have to live with lupus, it's better to have the skin version. I'm glad they can now give you appropriate treatments.

Bubby
March 1st, 2013, 12:58 PM
Marilyn, Isn't it good to finally know what's going on! I feel for you, as I have Lupus also and have to live on steroids more often than I would care to, but what can you do....it's either take the meds or suffer. So glad to hear you're feeling even a little bit better. Hang in there, GF! Hugs, Barb

EsGrandma
March 1st, 2013, 12:59 PM
Marilyn - so glad that you are feeling better - that rash sounds painful - prayers and hugs being sent your way.

auntiemern
March 1st, 2013, 01:17 PM
I do have systemic lupus, it has just decided to attack my skin at this time. Was diagnosed with SLE over 20 yrs ago. :(
Oh, Marilyn, you must be so relieved to finally have a diagnosis. And you're right, if you have to live with lupus, it's better to have the skin version. I'm glad they can now give you appropriate treatments.

shannonsaulter
March 1st, 2013, 01:51 PM
glad the meds are working and they they know what it is..geesh I remember geting a rash from a plant in my yard and it was all over took them 2 weeks 4 meds to get it under control and if I itch I will scratch till I bleed not good..You should make a nice softie blankie for the itch times...

toggpine
March 1st, 2013, 02:14 PM
Marilyn, I am glad they have some up with a treatment plan for you. I can't begin to imagine how horrible that is.
I'm pretty sure the steroids would drive me and my family about the same level of nuts. I only had to take them for a week and I was a nut case for the first three days. They might as well have given me an IV of quadruple-shot mochas! I hope they don't affect you the same way.
Here is to hoping that you get rid of that rash in a hurry now that you & the doctor have a plan.

K. McEuen
March 1st, 2013, 02:19 PM
I'm sure knowing what is wrong is a huge relief even if you still have the rash. Caladryl is my friend whenever I get a rash. Little bit of benadryl in calamine lotion and it seems to soothe it better than anything else can.

GuitarGramma
March 1st, 2013, 02:22 PM
I do have systemic lupus, it has just decided to attack my skin at this time. Was diagnosed with SLE over 20 yrs ago. :(

:( is right! :(

SuzyQue
March 1st, 2013, 02:23 PM
So glad you have a plan and things should be improving quickly. Nothing is as frustrating as itching!

rebeccas-sewing
March 1st, 2013, 02:46 PM
Gosh, Marilyn. So glad they've figured out the problem and you're getting treatment. Rest, rest and rest some more.

Donna F
March 1st, 2013, 03:28 PM
I bet you are glad you know what it is so they can get rid of it. I have one now that has began crawling up my arm and neck. My rheumatologist doesn't seem to be too worried about it. Oh well.

buckeyequilter
March 1st, 2013, 04:18 PM
What a relief that must be to finally know what is going on and start treatment. I'll say a prayer for you.

ilive2craft2
March 1st, 2013, 04:38 PM
Glad you have a diagnosis for the rash and are starting to feel less itchy - I hate being itchy and rashy, but seems to just be part of my life anymore.... Didn't you also have problems with your toe? Is it better? I sure hope so!

auntiemern
March 1st, 2013, 05:45 PM
Nope on the toe. GK's didn't have school today so I thought I could drive myself to get my labs done. And then go to the store for a few essentials afterward, while DH wrangled the kids. Big mistake. By the time I got home I was in agony. Soaked the toe, put on new bandages, and am currently resting on the sofa, (love seat actually so the don't have room to run into my foot) as much a a 4, 6 and 10 yr old will let me.QUOTE=ilive2craft2;260325]Glad you have a diagnosis for the rash and are starting to feel less itchy - I hate being itchy and rashy, but seems to just be part of my life anymore.... Didn't you also have problems with your toe? Is it better? I sure hope so![/QUOTE]

ilive2craft2
March 1st, 2013, 05:51 PM
Sorry to hear that the toe is still an ouchy! Get as much rest as possible - I know it is hard to do. Feel better soon!

Iris Girl
March 1st, 2013, 05:55 PM
so glad you have a diagnosis and some meds to help you feel better, take it easy and rest that toe so it too can get better

Marmar
March 1st, 2013, 07:18 PM
Auntie Mern ! Glad to hear the rx's are helping w/ the rash, you betcha Woo Hoo for you! Sorry the toe is still giving grief though. C'mon girl, we've got to get you healed up and back to sewing !

alliek
March 1st, 2013, 10:03 PM
Marilyn, Happy you have a diagnosis because that helps mentally if not physically. And that you have a treatment course, great, Keep researching your condition and questioning your physicians if you find something that you think may help. My prayers for you to feel better and stay well. God Bless.

Jess1377
March 1st, 2013, 10:52 PM
Oh good grief, you have had a heck of a week havent you!?! I am glad you have a doctor who is responsive and is able to help get you taken care of. I can only really empathize with you, knock on wood I've only had seasonal allergies. My poor sister though has had it pretty rough with rashes and allergic reactions quite similarly to what you describe :( I truly hope you feel better soon and will be in my prayers!

Sandy Navas
March 1st, 2013, 11:55 PM
Heck, M! I forgot about the steroids. I had to take them for 6 months many years ago and was sleeping about 1 1/2 hours a day - I cleaned my house from top to bottom, organized things that were organized already, painted the whole house, scrubbed the grout in all the tile with a toothbrush, managed to keep all the neighbors on alert . . . and loved every second of it.

And here I am wondering how to calm down . . . .

Here's to quick healing and R E L I E F !!!!!

aqua-teal71
March 1st, 2013, 11:56 PM
o.k. Toots, repeat after me: CRAP CRAP CRAP This is to make you feel better...... Do you?
I have R.A. and you know we are kissing cousins in this department.
You are in my prayers and always in my heart.

CrazyMtnLady
March 2nd, 2013, 12:28 AM
It must be a relief to finally get a diagnosis for your rash. Hope you continue feeling better.

lilmouse
March 2nd, 2013, 02:05 AM
Glad to hear they figured out what it is...and have a treatment course for it...hope you feel better soon....and that blankety blank toe starts to heal as well!

auntiemern
March 2nd, 2013, 03:25 AM
Oh the toe :( I am already wondering when I will ever be able to put that foot in a regular shoe, and if the pain will ever subside. The rash is slowly getting better. I do look like a walking band aid commercial though. I have the skin of a 90 year old, it tears very easily, so I have band aids on all the blisters on my hands, and fingers to keep them from busting open, lol. Gotta laugh about it, or I would be in tears all the time.
Glad to hear they figured out what it is...and have a treatment course for it...hope you feel better soon....and that blankety blank toe starts to heal as well!

Monique
March 2nd, 2013, 09:24 AM
Marilyn it is great that you are finally getting some answers and that treatment is available. I am ignorant when it comes to Lupus, so I will have to read up on it. Feel better soon, my friend.

meemeecyn
March 2nd, 2013, 10:01 AM
Continued prayers for you, Marilyn. I know this last flare-up has not been easy. You are a trooper, a perfect example of a strong woman. Take care, ok?

HdWench
March 2nd, 2013, 10:10 AM
Marilyn so glad they got an answer and the doc got to SEE the rash and get a plan together for you! OUCH on the toe, heal fast you are in my thoughts and prayers!

WendyI
March 2nd, 2013, 06:26 PM
such a relief to know what is happening and have a treatment plan. So sorry you had to go through that though. ((((hugs))))

Wwena
March 3rd, 2013, 04:28 AM
What an ordeal to go through! So nice to hear they know what it is now and you can get the proper meds. I hope they help real fast!!

Musical_Starling
March 3rd, 2013, 06:27 AM
What relief to finally have a diagnosis! They thought DH had lupus (the skin kind, whatever that's called lol) years ago because he had the "butterfly" rash on his face. Thankfully it's just rosacea and he has creams that keep it pretty well under control :)

I hope the meds all kick in quickly and the rash and toe are healed ASAP :)

SisterDi
March 3rd, 2013, 06:43 AM
Ugh! I don't have lupus, but I am an autoimmune nightmare in many other ways. My heart goes out to you with the discomfort you are feeling right now. I had gout in my right foot about six months ago, and I was ready to chop my toe off!

Steroids are such miracle drugs, but the side effects can bite me. :lol:

Sew Perfect
March 3rd, 2013, 08:52 AM
Gosh, Marilyn...I had no idea. I was just on a heavy dose of steroids myself! Your immune system is attacking your skin and mine has been attacking my eyes! How long have you known that you've had Lupus? Is it usually your skin that is attacked? I know Lupus is very dangerous, so I am praying for you. I do hope the doc is able to get it under control. Keep us posted on your health!

Jean Sewing Machine
March 3rd, 2013, 08:58 AM
Thinking of you, Sweetie, and praying that you'll be feeling better soon!

madampolo
March 3rd, 2013, 09:51 AM
Have you gone back to the doctor that did your toe, if it was a different doctor? Did they give you this white cream that is an antibiotic. I think it has silver in it. I don't remember what it is called, but my pod dr gave me a prescription of it to help the healing. I feel for you!!

SandyWhite
March 3rd, 2013, 09:57 AM
Good grief! You poor thing. Sending healing thoughts your way.

bhaggerty
March 3rd, 2013, 10:07 AM
That cream is called Silvadene - it is used for burns but also works well on any open sores.

Hope you are recovering from this flare up!
I have RA and after 8 years of Plaquenil, Methotrexate, Prednisone and Enbrel - I am in complete remission for the past year!
Thankful for that!


Have you gone back to the doctor that did your toe, if it was a different doctor? Did they give you this white cream that is an antibiotic. I think it has silver in it. I don't remember what it is called, but my pod dr gave me a prescription of it to help the healing. I feel for you!!

aqua-teal71
March 3rd, 2013, 01:00 PM
How did you get in remission? Mine has been flaring up and down. I can't take the Plaquenil. I am on Orencia and tramadol and melxocam. I developed an allergy to ibprofrun. I am glad to hear that someone has gone into remission. There is still hope.

debinmalaga
March 3rd, 2013, 02:13 PM
So sorry you've been through such an ordeal. Good luck with the treatment and I'm glad you're having some relief!

auntiemern
March 3rd, 2013, 03:11 PM
I was diagnosed with systemic lupus about 20 yrs ago. Symptomatic and ANA was exteremly high. I take, celebrex, sulfasalazine, plaquenil, tramadol, and flexeril, and took methotrexate years ago. Also have RA and Fibro on top of it. I haven't had a flare in years, and never on my skin like this. I would get rashes from sunlight and avoid the sun like the plague. Some times I am not good at taking some of my meds, especially if I am non symptomatic. But never in a million years did I think anything like this could happen, cuz I had never had this before. I think he is planning on putting me back on the methotrexate, along with the plaquenil to try to get it under control. Hopefully that will work, and don't have to be on the steroids long term. One day at a time.
That cream is called Silvadene - it is used for burns but also works well on any open sores.

Hope you are recovering from this flare up!
I have RA and after 8 years of Plaquenil, Methotrexate, Prednisone and Enbrel - I am in complete remission for the past year!
Thankful for that!