New Member

[shabs-123]

Hi there. Am a new member and was diagnosed in Oct 18 after what seems like years of ongoing tests. They took a biopsy from my chest followed by lots of bloodtests which came back as lupus. They said it was inbetween discoid and systemic, is this normal ? My chest and upper back is usually covered in rash and blisters but this is normally worse in heat/summer but am finding that it is flaring up constantly now, they have give me some cream but am really reluctant to put it on daily and the rash is actually appearing on my neck also. Sorry know this is rambling & bit vague but since I got the diagnosis i'm constantly worried about it. Thanks in advance

[whisperit]

Hello shabs-123

Good to have you on the forum. As far as your question goes, my take on it is that although there are distinct categories of lupus (and other types of systemic autoimmune disorders) that look neat and tidy in medical textbooks, in reality, we each of us have our own individual variety of autoimmunity. If you take a look at the stories of people here on the forum, you will find hardly anybody has a "classical" set of symptoms. not only that, but the pattern can change from time to time. For example, when diagnosed, my main symptoms were interstitial lung disease and Raynaud's syndrome in my hands. Three years on, those symptoms have virtually disappeared and now my big problems are severe fatigue and some weird episodes of autonomic dysregulation.

So "in between discoid and systemic" doesn't really surprise me. The important thing is that you get as clear a picture of what is going on as you can, so you can make informed decisions about what you need to do (including how often you use the cream!)

In any case, do stick around and you may find that other people's experiences resonate with yours. You are far from alone in this x

[shabs-123 in reply to whisperit]

Hi there. Thank you so much for your reply. I’ll be totally honest in that I’d never even heard of Lupus prior to the diagnosis I am still trying to get my head around it and am hoping by joining this forum it will help better with my understanding of it all & it does help to know that I’m not alone as it seems to be a condition that is not widely known about. I will carry on reading. Thank u again x

[KayHimm in reply to whisperit]

Well- put, Whisperit. I love the way a rheumatologist in an interview described that with his patients diagnosis is very difficult and that autoimmune immune patients frequently have their own shades and colors, not black and what. What a nice way to describe us!

[KayHimm]

You are not rambling and it is not vague. These are diagnostic dilemmas. Sounds like you have good doctors who are comfortable with uncertainty but will watch closely for any new signs of systemic lupus. You should ask them about prognosis. Studies show cutaneous lupus patients, even with some systemic features, rarely go on to have organ involvement. They will watch you carefully, though.

[Shorthouse]

Initially I was given antihistamine.after about 5years radhes

[Shorthouse]

Sorry pressed wrong button.i was saying after 5 years .my rashes stopped.i don’t know why unfortunately.not very helpful ,but hopeful.i had been on antihistamines for ages .i don’t touch them now.i have found losing weight and changing my diet has helped.also seeing a herbalist too.just to add since getting lupus I worry about things I never used to .i think it kind of gets me down.(mind you it might be old age)I hope you improve soon ,Start by giving up sugar & alcohol these cause lots of inflammation. X

[Chanpreet_Walia LUPUS UK]

Hi Shabs-123,

Welcome to the LUPUS UK HealthUnlocked community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

According to The Lupus Encyclopedia, “about 25% of individuals who have SLE also have discoid lupus as part of their SLE”.

We have a leaflet on discoid lupus which I can send in the post to you. Unfortunately, it is not available online. If you would like it sent out to you, email me at [e-mail]

Are you receiving any other treatment apart from the cream you have been prescribed? Also, is there a reason why you don’t apply the cream on a daily basis? People with lupus can experience periods of remission where their sign and symptoms are reduced due to lower disease activity within the body. We published a booklet on lupus and skin which you may find helpful lupusuk.org.uk/wp-content/u...

Rashes can be induced by sunlight or triggered by a reaction to medication and food as well as other factors. To find out what precautions you can take to prevent rashes caused by light, read our blog article at lupusuk.org.uk/coping-with-...

Please keep us updated on how you get on, wishing you all the best.

[Krazykat26]

Hi shabs n welcome aboard!!

What u are going through is sooooo tough..I'm glad you've joined this forum because u will get info..advice..tips..n comradeship...u are not alone!!!

I have been diagnosed with cutaneous lupus n have lots is skin rashes..cracking skin..itchiness..etc. I was initially diagnosed by a dermatologist following a referral by my GP. Can I ask who has diagnosed lupus for u? And what cream have u been given? R u on any other medication? The usual path with meds is hydroxychloroquine to start with and that can take a couple of months to have any effect.

Lupus UK is a marvellous resource for all of us..u can have a read n get yourself more informed about lupus. I hadn't even heard of it until I was diagnosed..my feelings at the time were..on the one hand I was relieved to have a diagnosis at last..on the other hand reading up on what it actually is reading that my life was never going to be the same as it was!! I was diagnosed in 2017 and I wasn't on the internet..that only happened last year..so I was out in the wilderness for a while but as soon as we got connected to the web I joined healthunlocked n it has made a big difference to my life..I'm still flaring n am on loads of meds..problems r still there but the people on this forum r extremely supportive..it's literally been a life saver for me!!

Try not to worry too much about things because stress is a driving force with lupus..I know that's easier said than done when u have many questions..fear of the future etc

Have u been given advice about protecting yourself from uv? Do u cover up with layers n sunhat n sunglasses even on overcast days? Light sensitivity is a tricky one n I have to cover up all the time

Anyway I've probably said enough for now..I hope that u are gonna feel a little bit better just by posting on this forum..stay strong as u can n keep posting xx