New Symptoms

[Suzie2]

Hi My name is Susan I am 36 years old. Since I was in my 20's I have seen 3 dr's. Two told me they felt from my blood work i was borderline Lupus. One told me he was 99% sure it was not Lupus but Fibromyalgia. My mother has SLE and this past week we went on vacation to the Jersey Shore. While I was there I was 50 sunblock but mid week I started getting sores on my head, like little itchy pimples and then one or two on my hand, 2 on my leg. They blistered and fluid was in them. 2 bruised up when I popped them on my hands and turned into a bigger blister and real deep red purple with a black scab in the middle. I went to a Dermatologist who did ask me alittle about my lupus but the truth is I have had arthritis since my 20's and some sensitivity to touch at times only. Feel Bruised sometimes on my arms or legs but not always. So I associated that to the fibromyalgia. I went with the thought I do not have lupus. But now with these sores on my scalp and how weird they got i am concerned i may be in denial. The dermatologist told me I have
Folliculitis, a bacterial skin infection to the follicle. Gave me a antibiotic orally and a cream to stop the itching and redness. I went home and reallized this could be discoid lupus, i do not know what to do next? they seem to be healing a bit, but has anyone had this same thing? can i expect them to come back? could the sun have made this outbreak? i have never gotten a rash from the sun, my mother with her sle cannot go out in the sun at all. She is in remission but still cannot go in the sun so it does not flare up. She had discoid and then systemic. Her 2 sisters also did. If I go to my arthritis dr and the scabs have healed how will he know? does it mean i have to go now when they are still not healed?

[cath]

Hi Suzie,

And welcome to the forum. I'm sorry to hear about your health concerns.

I'm no doctor and don't have discoid lesions, so don't take my word as being to authorative OK..... but, from what I have seen discoid lesions don't look like folliculitis usually (and I have seen folliculitis). The best way to confirm if they are discoid would be to have a biopsy of the lesion. Are they all healed now? If they come back or aren't healed, maybe you could discuss your concerns with the dermatologist and ask about a biopsy. He/she seemed interested and concerned which is a good thing.

It is a good idea to mention your recent problems to your rheumatologist when you see her/him. You have a very strong family history of SLE. Sometimes relatives of people with SLE have a positive ANA without having the disease themselves, so I can understand that you are in a slightly difficult position in knowing when your symptoms are significant or not. That is what the expert is for - do you trust your doctor? Let them know what is happening. If your symptoms are changing in the direction of more definite SLE of course it is in your best interest to find out quickly and start treatment.

You could always take a photo of the sores for the doctor to see. Maybe you could ring the dermy and ask your questions now. I know that often in the aoopintment we don't thing of things tha are important, and then all those questions come when you get home. Hopefully the doc understsands this too and won't mind answering your questions. I'd ask him straigt out if he thought it might be discoid - after all he asked you about your lupus, so maybe there was a reason for it.

All the best,

Let us know how you get on,

X C X

[helloos]

Hi there and welcome to the site.

It is a great place for support and information.

Cath gave great advice and I hope you can follow her suggestions.

Just wanted to say hello and nice to meet you.

[Suzie2]

is there a site to go to to view images to see if they look like mine? or here stories of people who got some sores and how thinsg went from there?

[Clare.T]

Welcome to the forum !

If I were you I'd get checked out for lupus again.

It might not be possible to tell in the early stages if what you have is discoid or not and quite honestly other people's stories might not be much help to you. They will not resolve your own worries. If they are discoid you will have to have a systemic check anyway.

It's not always possible for even doctors to be sure just by looking.

The theme of many stories about discoid is them not being identified early enough, thus wasting valuable treatment time and then people not being checked for systemic signs.

It seems to fairly common for there to be an initial outbreak that dies down and then a recurrence usually worse than the previous break out.

I would also advise being very careful of the sun whether they are discoid or not.

Picture sites can be seen in a post pinned at the top of the Symptoms section. Mostly if not all of these images are of typical advanced sores.

All the best

Clare

[GradStudent]

Hi. I can't say anything better than the others, so I'll just say welcome.

My mother has lupus as well. Her mother died from lupus when she was 2.

So much for those people who say it's not genetic eh? :)

Hugs and be well.

[loz82]

HI suzie :wavey:

welcome to the site, i have sle, was dx with it june 2005, i also have Folliculitis on my scalp, have been on differnet antibiotics for a year now - she says it is very hard to treat, i have tried differnt shampoos etc - the lot, getting fed up with it now, my dermy told me that it could be caused by my lupus or my diabetes (lupus as she said its inflamation of the hair follicles)

hope you get some answers soon

lozj82
x

[Jaly]

Suzie,

I went to the doctor in May with pretty much the same thing. The biopsy showed much inflammation and suggested discoid lupus. I changed doctors the next month because of insurance and this new doctor says she believes it is a lupus rash, but not discoid lupus. I have been back and forth between my doctor and my dermatologist and I have an appt with a rheumatologist next month.

My doctor is noncommital, but my dermatologist says that with the skin biopsy, my positive ANA, and other symptoms, she believes I have lupus.

I do also have other skin bumps that just pop us suddenly from time to time. Sometimes my face will feel a little itchy, and I'll think it's a stray hair or something, and when I go to scratch it, it's a huge bump, like a mosquito bite. But then it will disappear in a few hours and leave no trace. I also get tiny blisters on my hands that itch. They will leave teeny tiny scabs that go away within a day or two. I sometimes have the itchy bumps on my arms, but they too go away quickly.

I'm not sure what to think either. My DS DNA was negative, so I'm hoping that's a good sign. Whatever this is, I feel I've had it for quite some time. I'm fine with it, but I just want to make sure that if I need treatment to protect organs, I'm getting it.

Good luck to you in finding out what's going on. I have a feeling, at least for me, this will be a long process.

Jan

[Karin1]

Hi Suzie:)

I have discoid Lupus and SLE. The sores with Discoid again, don't seem to follow the rules in the books, and I believe that many can come and go looking very different from the "typical". I have them on my scalp, the ones that appear on my body from exposure from the sun can appear in many different ways. Sometimes a blister, sometimes a bump looking like a large pimple, and sometimes first starting out in what looks like hives, then developing into a blister. The BEST way to know is to have one biopsied. I had the lesions for years and years before I developed SLE, and for the life of me couldn't find a dr. willing to biopsy one as they didn't appear "typical". Wondering what the heck is "typical" in Lupus anyway???

Don't worry if they have healed up, if you have discoid Lupus, they unfortunately will appear again.

Good Luck:-)

Karin