I’m new to this, just after some advice

[Angelx01x]

Hello all.

I am new to this. I’m under the care of a dermatologist, I have been diagnosed with discoid lupus and have scaring and non-scaring alopecia and have had further blood tests for SLE which came back as a positive Antibody to Ro ANA with a titre of 2560, homogeneous pattern. I’ve been referred to a rheumatologist I’m just waiting my apt. It’s all a bit of a shock. I’ve looked into the diagnostic criteria and I tick a few boxes. Does it sound like I possibly have SLE? I have a slight malar rash, it’s not raised but it’s visible, I have discoid lesions, I’m not sure about photosensitivity? I do tan well but lately have been burning quite quick and did blister on my forehead with factor 50 on. The malar rash seems to be effected by the sun too. I am having many cognitive problems/difficulties, to name a few... Fatigue, headaches on a weekly basis, dizziness, struggle to retain info when being told something I have to make notes, some mild confusion at times, brain fog, thought block, feeling like I’m drunk, fluctuating mood, I can see but struggle to focus when I’m moving? I also have noticed i sometimes slightly dribble from the right side of my mouth this is very recent, I have pain in my knees, shoulder and neck but no swelling or redness. My palms go white when I’m cold, my feet go purple even when it’s a hot day and I’m very sensitive to the cold. Plus the ana result.

If anyone has any thought on my symptoms or advice I’d be very grateful.

Also does this mean if I have lupus it’s active at the moment?

Kindest regards

Angelx01x

[Redfox25]

It sounds like you are well informed which is really good. Do you notice that fatigue and other (maybe not skin related) symptoms increase with sun exposure? That might be something you can try and get a feel for.

The rheumatologist will use all the information you have gathered on yourself,bloods and the diagnostic criteria to make a full assessment. I think you are meant to have 4 of the criteria for it to be called SLE.

I don't think I can help much more than that, other than to say welcome to the group!

[Angelx01x in reply to Redfox25]

Thank you for your reply. I really appreciate it. I have been doing research into lupus as it was a shock when the dermatologist spoke to me about it and my biopsy results. I’m just trying to understand it all.

I haven’t noticed if symptoms get worse with sun exposure, but I will monitor that. Thank you. I have noticed that I do get very red very quick across my nose and cheeks, I have always just thought that’s just sun burn, but maybe it’s the malar rash being effected?

Do you know what is meant by immunological disorder, I think it’s no.10 in the criteria. I’ve researched this but it’s not very clear. Does it mean the antibody to Ro with regards to the blood test or that do I already have an auto immune disorder?

I don’t know if this is related or not, for a number of years now I get a dull pain in the left side of my chest, under my breast and below. It feels internal. It’s not constant but there are days where it’s worse than others. I have been looked into and had a stress test on my heart and bloods for a blood clot around the same time however all was reported to be ok. I’ve always put it down to stress but I just have wondered lately with researching lupus weather this could possibly have anything to do with it? I will explain my symptoms to the rheumatologist when I get my apt and see what they think?

Thank you again for your message and welcoming me to the group

[Chicky12 in reply to Angelx01x]

Hi, I am loving this group. It’s like everyone understands. I was diagnosed with discoid about 2 years before I developed full blown SLE, I was under a dermatologist who prescribed hydrochoriquine ( not for Covid x) it went away but then the SLE started. I would make sure you get all the bloods done to see the full picture. I was given factor 30 face sun cream on prescription for years after as the sun did make it worse.

[Redfox25 in reply to Angelx01x]

Hi Angel,

I'm no Doctor that is for sure but here is a link to the latest (I think) criteria google.com/search?q=lupus+c.... I'm not too sure about the immunological disorder and what that means.

I am diagnosed based on symptoms and slightly raised Ro. So you don't always have to strictly fit the criteria, i think a lot of it is professional judgement.

Increased redness over the face and cheeks in sunlight sounds like malar rash.

I sometimes have a pain there too and think whether it could be pericarditis. But I haven't been diagnosed with that so I have no clue.

What I would add, if it is lupus (and because you sound like someone who likes to know what you're facing, like me) then you might find it worthwhile investing in the Lupus Encyclopedia which is recommended on the Lupus UK website and is a great resource.

Keep talking on here if you need to/want to and take care x

[Cas70]

Hello Angel - I was diagnosed with Discoid 5 years ago. I also have Sjogren’s Syndrome. It sounds like Discoid to me. Try not to over research it at this point. You are lucky to have such a clear diagnosis and there is no certainty that this will develop into full blown Systemic Lupus. Stress and worry are not good for us. Drink lots of water. Rest when you get tired (even a 20 minute sit down will help). Moisturise you body daily - I found prescribed cream too heavy for my face so use Nivea. It is easy to become over anxious, so don’t. Rheumatologist will help you so don’t overload him/her. Brain fog and all other symptoms I have too and I don’t have Systemic just keep your eye on this website. Soooo helpful you might feel alone but you are not - you can always call the numbers for Lupus UK - good luck and keep in touch here. Cas

[Angelx01x]

Hi Chicky12 and Cas70

Ive had the lesions and hair loss for about 3 years b4 I was diagnosed and tried all prescribed lotions and potions before I was referred to a dermatologist and had a biopsy. I’m pleased to now know what causing this and I have very recently stated treatment.

I didn’t realise discoid lupus could cause different symptoms, I thought it was just lesions and hair loss, so that’s good to know. Thank you.

I will speak with the rheumatologist when I get my apt and obvs they will assess my symptoms and bloods and advise me further on what it is/isn’t.

I’ll try and stop googling too lol

Thanks for the advice.

[Angelx01x]

Thank you so very much for your reply, support and link/advice re the encyclopaedia, I’ll definitely look into that.

Yeh I did wonder regarding the pain I’m having in my chest but I’ll discuss that with the rheumatologist and just see what they say?

Works been very busy and stressful this week, I’m feeling the effects. More so that I am sooooooo tired, the dizziness has increased, even feel dizzy when I’m sat down, foggy brain/thoughts, weak arms and just generally worn out and and achy.

[Angelx01x]

Hi again..

I’m just wondering and after some guidance/advice. What’s the advice re lupus and coronavirus. I know I’ve not yet been diagnosed with SLE and I’m awaiting my rheumatologist apt. But if I do have SLE it may possibly be active based on my symptoms, blood results and I’ve not had treatment, does that make me more at risk if I do have it? I have been working throughout, I’m a key worker.

[Redfox25 in reply to Angelx01x]

Hi Angel, the advice is based mainly on medication. I guess you are not on medication yet so this may not apply to you, but if you are on hydroxychloroquine you need to follow social distancing rules. If you are on any of the other drugs for lupus (this is generalising but I'm trying to give a fairly straightforward repsonse) but basically steroids, methotrexate and a host of other immunosuppressants then you are at a higher risk and there are a variety of rules which go all the way up to shielding. There are some flowcharts to follow to understand where you fall.

If you check lupus UK's coronavirus updates online then the information should all be there.

[Redfox25 in reply to Angelx01x]

One part I didn't answer - about whether you are at higher risk untreated, I don't know the answer to that one, sorry. One to raise with your rheumatologist or GP in the meantime if no one here knows.

[Angelx01x]

Thank you for your replies. 😊