Anyone know about discoid lupus?

[dooit]

I've been diagnosed with discoid lupus recently. It was by default really, after taking part in a manchester uni study into scarring alopecia which required some scalp biopsies.I got a letter with my diagnosis a few days ago.

I've had blood tests for systemic lupus a few years ago which came back clear and a number of previous biopsies done, some from my mouth and others from my scalp/behind my ears. The biopsies were inconclusive and queried lichen planus and hyper kerratosis.

I've had a classic DL rash across my face and chest on a number of occasions and have scarred areas now where the pigment has gone and areas of permanent hair loss on my scalp.

My biggest problem though is joint pain. I can live with baldness and scars but my hips and knees are getting me down. I live an active outdoorsy life with lots of dog walking and horse riding but my discomfort can be severe at times.

The big question is can the joint pain be attributed to DL or not? After googling for hours I've got such a mixed bag of results. Some say you can get pain with DL and others say it's symptoms are skin related only and joint pain is a part of Systemic lupus rather than discoid.

I know I should see my GP to get a referral, which I will do, but I wondered if anyone here had any experience of this.

Lupus (and alopecia) is frequently mentioned on gluten free forum as a symptom/complication of coeliac.

Hi dooit,

I can relate to your pain, I was eventually referred and got to see a rheumatologist (sorry about spelling) he was great. I have had loads of bloods done and am awaiting the results. I am constantly tired and constantly feel crap. The sun kills me, i feel like a vampire. I too am having alot of hair loss at the moment which is worrying me as well as memory lapses. My mum has systemic lupus so they think the chances are quite high that i have it. Although from what ive heard and read it can take years and years to get it to show in a blood test.

Check out a site called uklupus.co.uk, it is v good.

I would definately go and see you dr and get a refferal asap. Good luck.

Hi nightcat. That's interesting, I've had a quick look on there. I don't think I have any coeliac type symptoms though. I'll have a better look later when the kids allow me!

Mortica, that's a brilliant site you suggested. Thanks. I also find the sun a nightmare. I adore the warm weather and holidays in the sun but it plays havoc with my skin. I'm supposed to wear factor 50 sun block all year round to stop the awful welts and rashes I get. It also flares up horribly if I'm stressed. I look like I'm falling apart at the seams, with sore eyes, lips, ears, cheeks, chest, upper arms and on occasion across the back of my shoulders.

How long do you have to wait to get your test results? I've booked an appointment with my GP for next Weds so I'll see what he wants to do with me. I've only just been discharged from treatment for my over active thyroid (also an auto immune disorder) so I was looking forward to a break from hospital appointments for a bit. Between me and DD we seem to go every other week for something or other (she also has autoimmune issues).

I find myself doing less and less when I'm sore. It just seems too much effort to go for a jog or a ride. It feels like a toothache in my joints if that makes sense. I could get quite depressed sometimes because it makes me feel so old. It started when I was 28 and I'm now nearly 37 and don't have a firm diagnosis on the joints yet.

I've been reading a bit more and it seems that the joint pain can be associated with Discoid Lupus too. here

I stumbled upon that site by accident, its great and they are all great for replying. You can ask them anything. Sorry to hear you have been suffering for so long. Ive had on and off problems for years but ive been not well as such since November. I too love the sun and holidays but unfortunately the sun doesnt like me AT ALL. Last weekend i was in Wales and even wearing factor 50 i had the welts. Lovely arent they.

Once i got my gp to refer i only had to waith 3 weeks to see rheumie, that was last Tuesday. He told memy results should take couple weeks and he would telephone me if it shows anything if not ive got a follow up appointment in 2 months. So just waiting......again.

Where do you get your sun rash? Mine is mainly on my chest, upper arms & neck. What sun cream do you use?

I don't know much!

But I was told that you should avoid alfa alfa as it can cause a worsening of symptoms.

I had severe joint pain until I found out I am very intolerant to wheat (just in case they are not related)

one of many links here

Yikes, that sounds awful to be affected with the sun cream too. I was prescribed E45 sun cream a couple of years ago. Since then I just tend to use whatever we have in for the DCs. I use Clinique Super City Block all year round on my face and that seems to work for me, I think it's factor 40 but I've just started using an Olay one with built in tan stuff too. It's only factor 15 but I feel so pale that I thought it would perk me up a bit...to date I've not had any probs but I've not seen much sun either.

My blotches are mainly on my chest and face but behind my ears gets bad too. I'm hoping that area may be more protected now as I've had my hair cut shortish and it covers up the bits that were previously exposed when I had my hair up.

I wish I had a photo to show you when it was at it's worst. There's one in my hospital notes from a few years ago that makes me gasp. It looks like someone had gone over my chest and cheeks with a cheese grater. Fortunately (touch wood) I've never been that bad since as I'm much more careful now and much less stressed.

This is not dissimilar to me at my worst

Noonki/nightcat, that's very interseting re. the wheat/gluten intolerance.

About 15 years ago I had problems with skin lesions on my back (GP said it was eczema) and sore eyes (GP said conjunctivitis but it never responded to treatment) I was at the end of my tether and a friend put me in touch with a naturopath. He said I was intollerant to wheat and dairy. For a time I cut both out of my diet and lost a stone in a month and all my symptoms cleared up. I gradually re-introduced both and eventually forgot all about it til now. Hmmm.

my wheat symptoms where as follows: blurred eyes/achy joints/severe fatigue/massive bloated tummy.

my mum had similar on and off for years - she stopped eating it then managed to start again.

skin lesions...I know coeliac has some sort of skin condition but think it is mainly on elbows.

Maybe worth stopping for a couple of weeks ant then reintroducing.