This rash is stubborn

hello im quite new to this site.im 23 and the mother of two young ones (4 and 3 months) I was diagnosed on 9/17/2012 with lupus. i had a rash that started on my nose and then completly took over my face arms and the v of my neck. we played trial and error for 2 and a half months all the while my skin was getting worse. once i was diagnosed they prescribed me hydrocortisone 2.5% cream and something that starts with a T. Also prednisone 20 mg 3 for 5 days 2 for 5 days and then 1 for 5 days. and its lightened up a little but now its on my LIPS and it hurts. i cant use the creams on my mouth i was just wondering if anyone else knows what night help ease some of this pain on my lips i cant deal with it. my skin hurts also and itches intensly. but all i keep reading is lupus rashes dont hurt or itch so which one is it?

Hi kamora … I use to have a really bad rash across my nose bridge and checks and chest, neck, scalp, arms and my doctor gave me prednisone and triamcinolone cream and it worked …I say give it some time and stay out of the sun and don’t scratch it…hope your rash gets better girl! !!! Love Dunnia …

Kam0ra

I had tumid lupus which is a rare form of skin lupus. Tumid is the only lupus rash that is itchy. It doesn’t leave a scare. I use the same creams on my rash. It can take sometime to go away! I take a medrol dose pack when the rash is really bad. That is what works best for me!

Have you had the rash biopsied? That is the only way they will be able to tell what type of skin lupus it is. I have posted pictures of my rash on my page. Go take a look and see if your rash looks like mine. I would see a demrotologist as soo as you can and have them do a biopsy of the rash. If you have no idea what it is perhaps the medication they have you on will not work as it should!

I also use a cream called SARNA. It is over the counter but you may have to ask the phramasit for it. It stinks but work well. Not sure if you can use it on your lips.

Best of luck and I am here just send me a message if you need me.

Deenie

Hello Kamora,

Lupus rashes can hurt and also itch, well a majority of them can it's all according to what you have.

I have DLE of the skin mixed with psoriasis which does itch but on myself it comes out in patches besides having blister spots and also red blood spots but don't get scratching at it will make it worse besides very sore.

You should be asked to be refered to a Dermo like Deenie added as she's given you some excellent advice on the situation and if bloods can't say what you have a biopsy definitely can because if it's spreading you need to see someone.

Take a look at this link of different rashes to the skin and if you click on the pictures they enlarge.

http://members.shaw.ca/tiderington/skin.html

Even if your under a rheumo they don't specialise in the skin like a dermo.

Love Terri xxx


its not spreading persay. its just really hard to stay out of the sun completely you know. its more like its moving, but only to sun touched spots. the only sun my skin sees is from the house to the car and im begining to think thats too much.
Tez_20 said:

Hello Kamora,

Lupus rashes can hurt and also itch, well a majority of them can it's all according to what you have.

I have DLE of the skin mixed with psoriasis which does itch but on myself it comes out in patches besides having blister spots and also red blood spots but don't get scratching at it will make it worse besides very sore.

You should be asked to be refered to a Dermo like Deenie added as she's given you some excellent advice on the situation and if bloods can't say what you have a biopsy definitely can because if it's spreading you need to see someone.

Take a look at this link of different rashes to the skin and if you click on the pictures they enlarge.

http://members.shaw.ca/tiderington/skin.html

Even if your under a rheumo they don't specialise in the skin like a dermo.

Love Terri xxx

Kam0ra

Do you use sun screen on your face and places on your body which are sun exposed?

Deenie

Hello there and Welcome I am new to this site as well and have found so much support! I had that rash back in February. It started out on the tip of my nose and within a day had spread to the "butterfly" shape that is common with the Lupus. It covers your nose and almost makes a "mask" on your cheeks. My face was so swollen I could see my cheeks below my eyes and yes it did itch! I went to an urgent care center that fortunately also had a "skin clinic" and they knew right away that it was Lupus (and I hadn't even told them I had it). They prescribed a high dose of prednisone (80 mg./day for 2 days, then down to 60 for 2 days, 40 and so on) and it went away. I still sometimes get a little red in the cheeks (not from sun) but that's all it does - so far anyway. Good luck to you!

Hello Kamora,

You know how your wearing a vest in your avatar...with skin trouble you can't do that, you need sun block cream on, something light in cotton where your arms and body are covered and it might sound stupid but just those small little travels to the car from the house you should have an hat on besides glasses to protect yourself from the rays.

Also the hydrocortisone cream your using is excellent but exposed to heat will burn your skin i used to use it and it helped me but i noticed i had to keep in shade to much exposure made my face go hotter plus it's a steriod cream and when you've finished the tube...you must have a break from it for 6mths as it's an aging process mainly to the face but those 6mths off it, helps the skin besides.

I know it's a miserable life but better to be safe and sure. :)
kam0ra said:


its not spreading persay. its just really hard to stay out of the sun completely you know. its more like its moving, but only to sun touched spots. the only sun my skin sees is from the house to the car and im begining to think thats too much.
Tez_20 said:

Hello Kamora,

Lupus rashes can hurt and also itch, well a majority of them can it's all according to what you have.

I have DLE of the skin mixed with psoriasis which does itch but on myself it comes out in patches besides having blister spots and also red blood spots but don't get scratching at it will make it worse besides very sore.

You should be asked to be refered to a Dermo like Deenie added as she's given you some excellent advice on the situation and if bloods can't say what you have a biopsy definitely can because if it's spreading you need to see someone.

Take a look at this link of different rashes to the skin and if you click on the pictures they enlarge.

http://members.shaw.ca/tiderington/skin.html

Even if your under a rheumo they don't specialise in the skin like a dermo.

Love Terri xxx

Hello Jan,

Sorry to hear you had th butterfly rash, when i had mine it was deep red like someone had burnt my face with an iron and sore looking...it's know where some can itch with it or it turnes out to be sore because i'm dark skinned it's left a pigmentation scarring on my face but you can only see it when a photo is took of me, the flash must expose it more.

Well if it comes again i hope your ok next time and all my love Terri xxx

Jan said:

Hello there and Welcome I am new to this site as well and have found so much support! I had that rash back in February. It started out on the tip of my nose and within a day had spread to the "butterfly" shape that is common with the Lupus. It covers your nose and almost makes a "mask" on your cheeks. My face was so swollen I could see my cheeks below my eyes and yes it did itch! I went to an urgent care center that fortunately also had a "skin clinic" and they knew right away that it was Lupus (and I hadn't even told them I had it). They prescribed a high dose of prednisone (80 mg./day for 2 days, then down to 60 for 2 days, 40 and so on) and it went away. I still sometimes get a little red in the cheeks (not from sun) but that's all it does - so far anyway. Good luck to you!

I can't die my hair if i do i break out and my ears swell and my lips swell it itches for day's..

Hi Pauline,

That sounds really sore and that's an allergie to your skin, so i'd be very careful.

Love Terri xxx

Pauline said:

I can't die my hair if i do i break out and my ears swell and my lips swell it itches for day's..



Tez_20 said:

Hi Pauline,

That sounds really sore and that's an allergie to your skin, so i'd be very careful.

Love Terri xxx

Pauline said:

I can't die my hair if i do i break out and my ears swell and my lips swell it itches for day's..

i didn't have this problem for a long time i have been dignosed with lupus about 15 years now

Pauline said:



Tez_20 said:

Hi Pauline,

That sounds really sore and that's an allergie to your skin, so i'd be very careful.

Love Terri xxx

Pauline said:

I can't die my hair if i do i break out and my ears swell and my lips swell it itches for day's..

Hi Pauline,

Sometimes with us getting older Lupus as been know to become more active...it's all according to how bad each individual as it but that is an allergic reaction to the skin.

I've got my head skinned now as my hair kept coming out...but the last time i had it dyed i had to check because of me on the plaquenil and even with plaquenil it stops the dye actually colouring the roots.

There's so many complications at times with ourselves and with meds besides stopping it.

Terri :)

yeah im using spf 70 i have a thick layer of some kind of cream on my skin at all times. maybe im just being impatient i just look like a big red stop sign. and it was never like a butterfly rash just all over my face. and make up does nothing to cover it up. the only part of my face thats its not on is my chin. i guess im gonna have to go buy a hat or a pretty purple umbrella for when i have to go outside.

Dewing3569 said:

Kam0ra

Do you use sun screen on your face and places on your body which are sun exposed?

Deenie

Hello Kamora,

I'm been wondering if it's "Rosacea" you have because where i have psoriasis with my DLE my sister as Rosacea with her Lupus.

That alone can appear in many forms on the face, my sister as it on her neck besides arms and she's using the same steriod cream as yourself and it's helped her slightly apparently.

These pic's may help you as they're of Rosacea.


"This is how my sisters face and neck looks"





this is my stubborn rash all red and peely

Omg Kamora,

It does look sore and i do recommend keeping covered and i know i can't swear to what you have not being a doctor but i've seen enough of my sister and that's how she comes out but hers goes right under the chin.

Please go and see your GP and get refered to a Dermo, as you do seriously need a biopsy doing, like Deenie and me mentioned before it gets to much out of hand.

Hugs & kisses Terri xxx

P.S Thank you for adding the pic's for us to see it properly and to me it's looks like you've got a flare going on there besides.

Kamora...i do deeply apologise as i'd forgotten from when we'd spoken you've had a biopsy and are waiting on all results to come in.

Hugs & kisses Terri xxx

yeah they have they results of my ana but they want me to make an appointment to disscuss the results. i guess to explain them due to different kinds of lupus. it can be sore at times. i have to wait to see a dermo b/c of no insurance right yet. im waiting on the ssi and disabilty to make their decision on me. i cant afford insurance and my doctor told me to apply for disability and medicaid. ive never been a sick person, always been very healthy and all of a sudden i could have something that can possibly end me. it just doesnt make any sense to me. its like my life just started and is now begining to end. like i know people can live a full life with lupus and all but it could already be severe and i dont even know it. and are all flares going to be as bad as this one (first one) or do they get worse everytime.