hi
I’ve just been diagnosed with lupus via positive ANA test ! Only symptoms are the sun burning my neck and chest and my glands swell !! No medication given at the moment as I don’t have any other symptoms? Is there medication for this sun allergy ??? Thank you for any help !!!
I’m afraid you have to wear factor 50 suncream and possibly a hat if it’s burning your neck. The sun also makes me feel ill if I stay out in sun for too long, I have to go and lie down, feels like sunstroke but can’t be. You are very lucky they havnt offered you at least hydroxychloroquine, that’s usually the first drug they give you.
thank you !!! It’s all very new to me, I was given sunscreen on prescription and wear it every day, will definitely get a hat I am seeing doctor today he might prescribe that medication!
I’m surprised your rheumatologist didn’t prescribe it for you, maybe they will discuss medication with you on your next visit. Sunglasses also help. Take care
I might be wrong, but I think some medications prescribed for Lupus can actually make you more sensitive to the sun, so if you don't have any other symptoms they might not prescribe any medication at the moment. They might just advise you to be extra vigilant with suncream and clothing/hats. I use the cream/lotion 1/2 hour before leaving the house, then spray the mist on my face just before going out. I also find the mists are convenient to take out and about for quick top ups (partly because I hate the feel of sunscreen on the palms of my hands!) Apologies if you already know all of this!
Just out of interest, who diagnosed you with Lupus based on a positive ANA test? Normally it requires more than that, as I have had positive ANA, other blood tests and symptoms that they think point towards Lupus, but I only have a diagnosis of undifferentiated connective tissue disease at the moment (there are a few of us in this boat in this forum). I'm not doubting your diagnosis, as a positive ANA in isolation with your sun reactions certainly does need more investigation.
Thank you for your advise it’s very much appreciated! Test done by my own doctor all other tests where normal ? He has now referred me to a rheumatologist! My only symptoms are the sun sensitivity on neck and chest no joint pains ! I use sunscreen sp50 and have bought tops with sp50 in them, I’m just at a loss what to do it’s very scary and now I will be worried about a rheumatologist appointment!
Please don't worry too much, I didn't mean to make you anxious! One of my earlier symptoms (after fatigue and night sweats had kicked in) was getting rashes from the sun, including a particularly bad one that blistered in 2020. The rheumatologist will be best placed to interpret your blood test results and may do further specialist ones of their own. You're lucky your GP is taking it seriously - I told one of mine in 2021 that I was worried it was Lupus and she just laughed at me 🫤 I asked my current GP if she could retest my ANA and associated antibodies a couple of weeks ago, as I'm feeling dreadful and thought it might pick something up, but it was greyed out on the system and looks like GPs aren't able to request that (or not every easily anyway).
So stick with that GP, as it sounds like they're clued up on autoimmune diseases. And please don't get too stressed out - I know it's easier said than done, though!
Hi Edm174,
You might want to get this clarified by your GP. Is he thinking you have cutaneous lupus.? That is lupus of the skin.
I agree with the others that it seems unusual that sun sensitivity and positive ANA alone isn’t usually enough to diagnose lupus. From what I have read, one of the things that distinguishes a lupus facial rash from rosacea is that the patient is usually sick.
A GP can watch a patient to see if symptoms develop so it is surprising he is referring you this early to a rheumatologist. I would want to know what he is thinking.
You may have less reason for concern than you think. Good you will see a dermatologist.
Good luck with this.
K
Thank you for your reply! It’s all very new to me ! But i don’t have any joint pain ! I get tired but i do have atrial fibrillation too, i am trying to read up on it ! Strange all other blood tests normal apart from this ANA one !!
From Lupus uk website:
“LUPUS UK provides a wide range of publications about lupus which are free to read and download on our website HERE:
lupusuk.org.uk/publications/
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