Discoid lupus

[Niamh45]

Hi I have recently been diagnosed with discoid lupus and now having Ana test done to check for systemic. I already have a scar and bald patch on the side of my head and I'm afraid of what the future will bring. Has anybody got any advice. Thanks

[georgie63]

Hi Niamh,

I have Systemic Lupus too but they say I only have it mildly. I do suffer with a lot of pain as I also have Chronic Pelvic Pain too.

But everybody is completely different with how the lupus affects them. Your best bet is to read the comments that people post on here and then you can see whether they have what you are experiencing too.

The norm is tiredness and fatigue that seems to be the big one, pains in the feet, rashes and itchy skin and the butterfly rash on the face, but not everyone has that.

Just take things a day at a time and sign up for the newsletter then you have it all at your fingertips to refer too. But if you are worried about anything then speak to your gp. Also post it on here too and all us Lupies will be able to tell you if it's normal for lupus or not.

I hope I've helped you, Niamh.

Xxx

[Niamh45 in reply to georgie63]

Hi georgi

Thank you for the reply. My symptoms are being very breathless at times. Tiredness always getting told off for falling asleep in lounge even early evening I just can't keep eyes open and often have to have hour in afternoons. Some mornings I wake and struggle to walk just can't bend ankles after 30min or so they are fine.this hasn't happened for couple of months though Also feel really fuzzy headed but perhaps this is due to the change. Only rash I have is discoid one on my scalp.

[tennissenior]

Dear Niam,

If you have been disgnosed with Discoid Lupus, chances are you don't have Systemic. Most people have either one or the other. Discoid is not as severe and responds well to treatment, while Systemic, which I have, bears many "ugly faces." Systemic attacks your entire body - not all at once, but over time. I know Discoid is difficult because of the rashes and the sun is not good for you. No one can see Systemic Lupus, so it's very difficult for the people struck down with it to make healthy people understand or accept how sick they are. Your doctors should monitor you closely and you will do well. Nothing to be frightened of - Discoid Lupus is not all that bad. It's sure not good - but it is treatable and controllable.

[foxglove]

Hi Niamph45, I have had discoid lupus (diagnosed when I was 17) though really had it from when I was 13. I am now 75 and in reasonably good nick - though I say so myself! had to stop meds. many years ago as eyes affected. apart from being uber careful in the sun and trying not to get "stressed out" I don't do anything else. l also had scars and bald patches but they gradually sorted by themselves. Try not to be afraid of the future - I'm still alive and very much kicking. All the best and good wishes

[Wendy39]

Hi. Welcome to the site. I have found it very helpful and I hope you do too. I was diagnosed with Subacute Cutaneous Lupus (SCLE) in November 2013 - so 16 months ago now. This is a sub group of discoid and systemic lupus, so I have symptoms of both, including a positive ANA test result. I was what I now know to be my second big flare up of symptoms. I was suffering from so many things at that time, including various skin problems, the lupus butterfly, sun sensitivity, hair loss and thining, headaches/migraine/cluster migraine, depression, swollen glands, memory problems (also known as lupus brain fog), loss of appetite, extreme fatigue, nausea, diarrhoea and dizziness. I felt like I was going mad and so for me, a diagnosis was a relief at first, that I wasn't imagining things and I was right, there was something wrong with my health. Then the reality sinks in of what that diagnosis means. I bought a lot of books and joined this site and try to educate myself about the illness. I was prescribed Hydroxychloroquine and this took a long time to work, completely, but now seems to be controlling most of my symptoms. I still get extremely tired and get itchy skin, little patches of hair loss, etc but I have learnt to listen to my body and not feeling guilty about resting when I need to. Even if it's an hours nap before cooking our evening meal, it may help me going down hill - so it's worth it. Anyway, everyone's lupus symptoms are very different. I am extremely lucky, that so far, mine hasn't attacked my internal organs. And the medication is working. I know that might not always be the case, but for now I am able to live a relatively normal life. I also know there are a lot of people who have it a lot worse than me. 16 months has given me time to get a little perspective on it all. I did write a blog for Lupus UK, which was published in here and there website in February 2014. I would also say, I know it is easier said than done, but stress doesn't help you at all. I have had a lot of family issues to deal with since my diagnosis, including deaths in my family and my sister's marriage breaking down and I have learnt that there is only so much I can do and I have to look after me, otherwise I am useless to my husband and children. So I wish you well and don't be afraid to ask your questions here as people are happy to help and share. You are not alone.

[davetrindle]

My father had Discoid Lupus since early adulthood. He had some scars, but not severe. He took an anti malarial that kept it under control, and he lived a long, productive life. He was sensitive to the sun, but that may have been due to his fair skin. I don't really think it is related to SLE that much, other than a similar rash...good luck and don't worry too much...best regards, Dave Trindle

[Niamh45]

Thank you so much for your reply. It's just nice to hear from other people. Since being diagnosed I have just been left to get on with it. I'm not seeing my dermatologist for another 2 months and was just told my biopsy results in a letter. So have just had to rely on Google to find out about discoid.

[traceymcx in reply to Niamh45]

Hi Niamh, i was diagnoised with Cutainious Discoid Lupus nearly 3yrs ago, and like you i was told by Dermatologist after a biopsy on my cheek. He didt have any leaflets to give me so he wrote the lupus.org site to get my info from. Like you i have a few bald patches on my scalp but i also have scars on my face from previous lesions. I have tryed numerous medication including anti-malarial tablets that up to now have not worked i was allergic to hydroxy my hands & feet blistered. Iv had injections in my scalp that have not worked. I also have secondary raynaurds due to lupus. Im currently under the fertility clinic to find put why im not getting pregnant. Ive had bloods done by my gp and they came back i have high colesterol and thick blood alls he told me to do was quit smoking which iam trying with the Champix. Lately iv been suffering from constent flu and my voice feels like im straing it and sounds like im loosing it memory loss, joint paint in elbows wrist and ankles. Also suffer with IBS. Im only 37 also used to suffer with

[traceymcx in reply to traceymcx]

Sorry i posted before i finished. I always used to suffer with growing pains as a child. And got psoriasis when i was 14 due to a stressful family situation. I think that stress has a lot to do with it too. Im sorry im not very helpful but your storey touch me as im finding so hard to deal with sometimes. Its like no one else understands me. I thank the lord for these sites they are very helpful.

[Niamh45 in reply to traceymcx]

Hi Tracey. Thank you for your reply. Like you said it's so nice to talk to people with the same problem. Until I was diagnosed I think that I had heard of lupus but didn't know anything about it and when I have told someone what I have got they just look at me daft. Sorry to hear you have fertility problems that must be very hard but I'm sure they will sort you out. I have had blood tests over the years as I have slightly swollen thyroid. I have had scans which say I have many nodules on it so now my dermatologist is getting in touch with an endocrinologist as he said my tsh levels are very low I wonder if this is linked to discoid lupus ? Mine started last October I felt a swollen lump on scalp. Eventually it changed colour and all pigmented so went to docs within the week I seen a dermatologist and had 2 biopsies taken. The hair on the lesion has gone and about a cm all around it too. Bald patch is about 1"in diameter all together. Just wondering how do you know your going to get a flare up. Every tingle I get now I worry and I am forever running my fingers through my hair feeling for lumps. Hope you are well x

[traceymcx]

Sorry for the late reply niamh, I think that is the hardest getting people and famile to understand. I'm sorry to hear you suffer with your thyroid too. You endocrine system controls your brain if I remember correctly. How did you get on? I think the loosing your hair can be most worrying. Mine started 4years ago. I find it hard too to know when I'm flaring I don't think I've ever not been in a flare since being diagnosed. The best advice I can give you is write everything down you experience and take it to your doctor. Good luck. 😊