Another Tumid Lupus person here. Unfortunately I can relate, when I first was diagnosed I itched like mad, and it felt like bugs biting. Steroid cream really didn't do much, oral steroids helped a lot more but only while I was on them, Eucerin lotion helped some, Atarax helped much more. It wasn't until about 4 months or more on Plaquinel that the super intense itching subsided. Now the worst is when I get out of the shower. I still have the rash cyclically every two three weeks, chest, torso, back arms, butt, no matter what spf I ware daily along with daily steroid ointment and Eucerin. I am just one moisturized red spotted chick. Ask the doc for some atarax its an anti itch pill, it will make you sleepy so be careful if you have to drive, but it will help, and the other thing is a really good moisturizer NO SCENT, I recommend Eucerin. Good luck, I also recommend the biopsy, sounds like you could use to find out what you got.
Honey I am so sorry! I know your in pain and I wish that the disability people could receive pictures, because straight away I would tell you to send these pictures to them! You really need to have the rash biopsied. But I also understand the fact that you don’t have insurance. Please understand that you will not get medicare insurance for two years after your approved for disaibility unless you are in nstage renal failure which is an automatic approval.
I hope you with your doctors help you can find someway around the insurance nightmare and get the help you need as soon as possible.
Yes do whatever you can to stay out of the sun. Don’t use hot water in the shower either because that can make it worse. I also use attract as well for the itching like Kimberly stated above. Maybe that may help.
Just scrolled down and saw your pics, yup, you got it alright, looks all too familiar. If I had to guess that looks tumiddy to me. Does it start out as dots or lines and then connect and get more and more red and intense till it all connects? Then its just as painful and itchy, almost bity feeling? Also when you press on it does your skin turn white? If so, that really sounds like a annular rash which is classic tumid lupus. I was diagnosed in April 2012 by a skin biopsy, ANA neg but have all kinds of other crap going on, be happy to chat if you need it. hugs again
Hi KamOra, my name is Beverly L., and i have had the LUPUS rash also for a long time !!!! Oh yes it itch very BAD at times . My skin flakes and itches like crazie . So my GP perscribed Ketoconazole at 2% shampoo , for me to use from head to toe , but of course i did use it on my hair at first but about 3weeks later my hair started falling out - so now i just it from the face down which really has helped me with the itching . Also i've started using Bition at 5000mg , Cortizone 10 for Eczema and vitiam E and within 2months the rash has totally gone away ( for the moment -smile ) . Last week when i went to see the Rhemy doctor , i told him that i was taking these pills and he look at me with SURPRISE on his face ( like okay !!!! how did you and how do you feel since adding these pills to your other pills ???) Of course i use to be into herbs but along the time i stop doing herbs , back to the answer , i stated to him that my face had improved very well ( i had started staying in the house because people were stirring ) , and now there is no bumps nor itching my hair has stop falling out and my energy level is GREAT - it really feel good to be somewhat normal again!!!!!!!!!!!LOL Well hope that this information help you and ask the doctor for a script of the Ketoconazole @2%shampoo and if able pick up some of there other things from Walmart ..... talk with you later .... Beverly L.
i have some of that shampoo for my daughters cradel cap and i did try it like a month ago because of my doctors thinking it was some kind of fungus and it burnt my skin serverely made me cry out in pain almost immediatly. cant touch that stuff ever again i told myself.
Beverly L. said:
Hi KamOra, my name is Beverly L., and i have had the LUPUS rash also for a long time !!!! Oh yes it itch very BAD at times . My skin flakes and itches like crazie . So my GP perscribed Ketoconazole at 2% shampoo , for me to use from head to toe , but of course i did use it on my hair at first but about 3weeks later my hair started falling out - so now i just it from the face down which really has helped me with the itching . Also i've started using Bition at 5000mg , Cortizone 10 for Eczema and vitiam E and within 2months the rash has totally gone away ( for the moment -smile ) . Last week when i went to see the Rhemy doctor , i told him that i was taking these pills and he look at me with SURPRISE on his face ( like okay !!!! how did you and how do you feel since adding these pills to your other pills ???) Of course i use to be into herbs but along the time i stop doing herbs , back to the answer , i stated to him that my face had improved very well ( i had started staying in the house because people were stirring ) , and now there is no bumps nor itching my hair has stop falling out and my energy level is GREAT - it really feel good to be somewhat normal again!!!!!!!!!!!LOL Well hope that this information help you and ask the doctor for a script of the Ketoconazole @2%shampoo and if able pick up some of there other things from Walmart ..... talk with you later .... Beverly L.
Bless your hearts! I am learning a lot about the rashes here and I pray that they find some relief for you as soon as possible!
My butterfly rash is chronic and I've had it for nine years. It doesn't itch or peel, but I can tell when it is brighter some days because it feels like I'm sunburned from the inside out. There isn't anything I can do for it except stay out of the sun as much as possible.
soi just realized that i forgot to include that the palms of my hands and soles of my feet have a rash also. very red almost purple and itchy and painful. any suggestion as to what it might be and what might help. the skin is also very tough kinda sandpapery.
@kam0ra I have read that some lupus rashes do itch. Due to receiving the IV treatments for couple yrs & having the lupus, I’ve developed a heightened sensitivity to the sun. I am African-American but my skin burns quickly now. The texture of my skin changes very quickly in the sun & begins to itch & burn. Pharmacist recommended the Aveeno active natural products to help me w/ lupus rashes. Its a bit more expensive but helps alot for me. I use the cleanser & ultra calming daily moisturizer w/SPF 15. It contains naturally calming feverfew.
I also was thinking about your situation laying in bed last night and I too have to agree with Ann. Using other topical creams may be irritating the lupus rash. I have problems with using lotions and sunscreens. I am allergic to a lot of things. The best person to figure this all out is the dermatologist.
If you can post pictures of the rash on your feet and hands for us to look at it might help. You also could have a form of vasculitis going on as well as the rash. When I looked at the pictures you posted I saw a difference between the rash on your face and chest then the rash on your arms. The rash on your face and chest appears to be a raised rash in the pictures and the rash on your arms appears to be smooth. It might just be the way the picture was taken, but to me I see a difference. I just feel so bad for you. I know how bad you feel with this rash and i am sure your joints are causing you problems as well. I have been then myself. I wish that there was more I could do for you. The atarax may help or another round of steroids but the doctor may try medrol dose pack this time instead of prednisone, just a suggestion. Medrol works better for me then prednisone for both my rash and vasculitis issues.
I hope today is a little better day for you! Sending prayers up for you mu friend…Deenie
How you feeling today and i hope your going to book an appointment to review your results with your doctor as they can tell you many things besides...which may help even more.
There's so many skin issues involved besides vasculitis like Deenie said and the only way of pin pointing them is through a dermo because vasculitis alone is serious if that's what you have.
so my appointment is oct 3rd. im not allergic to anything as i just recently had an allergy test. today might not be a good day i didnt sleep well at all last night itchy itchy itchy! lol but ill make the best out of the worst. the rash on my face is a little swollen but its smooth like my arms too. its kinda hard to see the rash on my hands and feet in the pictures but its there.
Thanks for letting we know when your appointment is and sooner the better i say.
Sorry your night was restless but really hold against scratching and some skin conditions can really overtake the body but Ann's made a good point "dermititis"...as this one had totally gone out of my head.
Hi kamOra, Sorry to hear this , don't try it - Please ???!!!!! Well hope that the other items ( if you decied to try them ) works ..... Beverly L.
kam0ra said:
i have some of that shampoo for my daughters cradel cap and i did try it like a month ago because of my doctors thinking it was some kind of fungus and it burnt my skin serverely made me cry out in pain almost immediatly. cant touch that stuff ever again i told myself.
Beverly L. said:
Hi KamOra, my name is Beverly L., and i have had the LUPUS rash also for a long time !!!! Oh yes it itch very BAD at times . My skin flakes and itches like crazie . So my GP perscribed Ketoconazole at 2% shampoo , for me to use from head to toe , but of course i did use it on my hair at first but about 3weeks later my hair started falling out - so now i just it from the face down which really has helped me with the itching . Also i've started using Bition at 5000mg , Cortizone 10 for Eczema and vitiam E and within 2months the rash has totally gone away ( for the moment -smile ) . Last week when i went to see the Rhemy doctor , i told him that i was taking these pills and he look at me with SURPRISE on his face ( like okay !!!! how did you and how do you feel since adding these pills to your other pills ???) Of course i use to be into herbs but along the time i stop doing herbs , back to the answer , i stated to him that my face had improved very well ( i had started staying in the house because people were stirring ) , and now there is no bumps nor itching my hair has stop falling out and my energy level is GREAT - it really feel good to be somewhat normal again!!!!!!!!!!!LOL Well hope that this information help you and ask the doctor for a script of the Ketoconazole @2%shampoo and if able pick up some of there other things from Walmart ..... talk with you later .... Beverly L.
Hi Tez, i know exactly what you mean about staying out of the sun with the rash -smile but like i mentioned to kamora, those products in my response to her they have really helped me . And am totally happy now that people don't stir and asking what's going on with my face . Try them for at least 3-4 months and see if they work for you , talk with you later .....Beverly L.
loriken214 said:
Bless your hearts! I am learning a lot about the rashes here and I pray that they find some relief for you as soon as possible!
My butterfly rash is chronic and I've had it for nine years. It doesn't itch or peel, but I can tell when it is brighter some days because it feels like I'm sunburned from the inside out. There isn't anything I can do for it except stay out of the sun as much as possible.
As others have said the rashes can sometimes itch and hurt especially if they ulcerate. I currently have them down my ear canals and up my nose. And finding a good dermatologist is imperative it can be the difference between scarring and not scarring on the face. The fact that it is on your lips of course complicates it. keeping the area hydrated helps. Have you tried patrolling jelly. not to clear the rash up but to keep your lips from ulcerating. I have also used honey and mixed vitamin e gel caps into it and slathered it on my lips and ear tips that has helped too. Getting the flare up under control will do wonders for the rash itself. I hope I have helped. God Bless you and your family
Hi! OMG!!! Julie, i have them the LUPUS bumps to come inside my mouth and ears and up my nose , and in my head ( which really hurts - when i realize that they are there) !!! Yes they are so borthersome . There is nothing i can do that's the crazie part ,LOL ... Now all i do is just go with the follow of things and let it take it's course. hope that you feel better.... Beverly L.
Julie said:
Hi Kam
As others have said the rashes can sometimes itch and hurt especially if they ulcerate. I currently have them down my ear canals and up my nose. And finding a good dermatologist is imperative it can be the difference between scarring and not scarring on the face. The fact that it is on your lips of course complicates it. keeping the area hydrated helps. Have you tried patrolling jelly. not to clear the rash up but to keep your lips from ulcerating. I have also used honey and mixed vitamin e gel caps into it and slathered it on my lips and ear tips that has helped too. Getting the flare up under control will do wonders for the rash itself. I hope I have helped. God Bless you and your family
My hubby stuck a gazebo up this year for me to sit under...no sun blaring on me mate and the temp was just right for my raynauds...but winter is pulling in here now loads of rain and i've been dithering for several nights so the rads have gone on now.
I'll right them down for next year if we have any summer and thanks for the advice beverly but i will say this which i've noticed alot with Lupus it does'nt matter how much we use stuff and protect ourselves...Lupus still finds a way of making we suffer.
Takecare it easy Beverly..allmy love Terri :)
Beverly L. said:
Hi Tez, i know exactly what you mean about staying out of the sun with the rash -smile but like i mentioned to kamora, those products in my response to her they have really helped me . And am totally happy now that people don't stir and asking what's going on with my face . Try them for at least 3-4 months and see if they work for you , talk with you later .....Beverly L.
loriken214 said:
Bless your hearts! I am learning a lot about the rashes here and I pray that they find some relief for you as soon as possible!
My butterfly rash is chronic and I've had it for nine years. It doesn't itch or peel, but I can tell when it is brighter some days because it feels like I'm sunburned from the inside out. There isn't anything I can do for it except stay out of the sun as much as possible.
