Skin...

[MarthaP]

Morning everyone,

Sorry about this but I just need to have my moan for the day!

I've woken up really depressed today....I as wondering if anyone can help...

I have had problems with my skin for years now. Its red, spotty, dry and itcy. :sad: The doctors and dermatologists have always said a mixture of acne and dermatitis. Now, I know I have lupus, I'm sure it must be that.

Whenever I read it up, it seems to say that people with lupus only get this during a flare. Is this true? I have it all the time, obviously sometimes it looks worse but its always there! :sad:

I am currently using a protopic ointmant to get rid of the dryness but doesn't help much. I would be grateful for any advice and help. It's really getting me down.

Thanx

Martha
x

[Clare.T]

Hello Martha
I don't know where you have been reading but it isn't true that the malar rash appears only during a flare. Like other forms of lupus skin it very often worsens during a flare. It can come and go but can also be chronic.

It will worsen after sun exposure and can also be worse at times of stress.
The Protopic increases photosensitivity so extra care needs to be taken.

It's also not really meant to be used long term on a daily basis although these ointments don't damage the skon as much a steroid creams do, used long term and overused. I tried it and didn't think too much of it but the other similar drug ( they are powerful medicines ) seems to suit me better. That's Elidel, pimecrolimus.

With a bit of luck you should see some improvement after a few weeks on Plaquenil.
That malar rash has various appearances form a slight blush to an acne like appearance.
Treat your skin with the greatest care using fragrance free items, limiting the use of water and avoiding any rubbing. And investigate sun blocks to find which suits you best, as you've probably read a zillion times here already :)

Skin problems sure are very depressing, like the last straw. Have you considered taking an anti depressant at least to make things easier in this diffucult stage post diagnosis and early days of treatment with all the uncertainties

Many of us do either long term or to tide us over difficult times.

Hugs
Clare

[evie-f]

Martha

I'm not properly dx'd yet, but I have to say what you describe sounds very similar to what I experience and I fully sympathise.
My skin is dry, itchy and spotty, and has gradually got worse through my adult life. That is around all the time, but I also get the face rash and that comes and goes.

For my skin, the best thing I've found to soothe the itching and improve the general condition (including reducing the red spots) has been a simple over the counter calendula healing or dry skin cream. I apply it twice a day and it definately helps me.

Eve x

[MarthaP]

Thanks for the advice guys....Im currently trying out a dry skin cream. I'm going to stop using the Protopic as im worried about using it too long term.

Another question:

Does anyone also get a dry scalp with dandruff? Do you know what I can use for this?

Thanks

Martha
x

[denalirat]

Hi Martha,

I've had problems with this for quite a while and over the past several months I developed a malar rash (albeit somewhat faint in comparison to the ones I've seen online!). Now after 5 or 6 weeks of being on Plaquenil, my rash is almost completely gone!! I haven't noticed any other effects of the Plaquenil yet (such as helping joint pains or anything), but it has DEFINITELY helped my rashes subside.

kit

[Okie]

Hi everyone & Martha
Yes, skin problems can be a downer. I was given steroid cream and haven't used too much of it because I know the side effects can sometimes be worse than the condition.
I have a condition called granuloma annelare all over my hands and arms. It's completely harmless but very unsightly. I've had it for years and strangely enough the only time it disappeared is when I had chemo 5 years ago for breast cancer.
It came back full force and much worse after the chemo treatments stopped.
Does anyone know if this skin condition (granuloma annalare) is connected to lupus?
Also Martha, I would get a second opinion if you're not sure about your doctors diagnosis of your skin condition. There are so many skin conditions that sometimes a biopsy is required to confirm the diagnosis. Also many skin conditions improve over time and especially when you go into remission. Sure hope it's soon!!
Take Care & I hope you get some answers soon!

[halfpintfl]

Hi Martha, I just wanted to say to run, don't walk , to get yourself a Dermatologist. It is my own personal belief that everyone with any form of lupus needs a Dermy in their pocket. I have one and I couldn't live without him. After all, skin is what they know. good luck and be well.

[LolaLola]

With regard to the scalp, I try my best,so does my hairdresser,to keep all styling products, shampoo etc. on the hair, without touching the scalp.
A very small amount of Body Shop shampoo works well on my hair.
Otherwise I would scratch myself silly!
x Lola