Newcomer. SLE

[joedel]

Hello all. I am a 63 year old male and "out of the blue" have recently been diagnosed with SUB cutaneous lupus. My biopsy and blood tests confirmed I am R.O positive. It all started with a skin rash on my arms that i thought might be coming from chemicals in paint i was using to touch up some doors and skirting boards. After a number visits to my GP and eventually a consultant I have been told that I have photo sensetiviy and apparently my rash is being triggered by the sun and bright lights.This is after spending all of my life enjoying sun holidays !. I am trying to understand the underlying triggers as to how I would have contracted this photosensitive issue. I have had a number of stressful situations in recent years and in 2016 my Brother passed away having been diagnosed with a brain tumour 12 months earlier. I am thinking this might have been the final trigger. I would be happy to hear from anyone who might be in a similar situation and if they have improved their situation through diet/exercise /medication. I have been told to stay clear of the sun but this is almost impossible. I was on a sun holiday in recent weeks as it was already booked prior to my diagnosis. While I remained under an umbrella for the entire holiday,never the less, a rash flared up on my back and chest. Could thus have been triggered by heat as opposed to direct sun days ?

[Ianrussell69]

Hi ,I have to say sun and stress for me are the biggest triggers factor 50 and a trillby when I go out now ,when they get your Meds sorted you will feel more in control and you will recognise when you are about to have "flair"and learn to take it a bit easier nice to here from anuther man as we are in the minority here . the people on this site will help you advise you and understand what you are going through they have been a massive help to me and continue to be a help

[farmerfeste]

Hi Joe del lupus is a funny beast I worked all my life outdoors (farmer) mayby had to much sun maby too much stress as well although I think it was with me most off my life I was 53 when I got my diagnosis and 63 when diagnosed with other immune system illness now

Retired and doing my best to enjoy life it's ok on the good days hard to stay out of the sun

You may need to take some vit D ask your gp to test your vitamin levels

Take care george

[maggielee]

Hi I also have subsecute cutaneous lupus, after a few years I just avoid light as much as possible despite my love of the sun and living near the sea. Hard to change but with a few more autoimmune issues that followed sjorgrens and Raynaud's I am trying not to make my life harder.

I go as far to cover my hand while driving which hello the tingling sensation I was getting. There are some interesting studies on UV and if sensitive e enough you have to watch reflective light (on sea for example) and even some UV in cloudy days and Even shade according to these studies. I have my rash under control but not the tiredness which has gotten worse & I am getting more meds for in addition to hydroxy.

As mentioned 50factor and layers if you don't want to be covered by it. There are sun clothes as well which help. I am still learning & the forum is great for sharing & learning & support of course.

Wishing you well 😎 ML

[Chanpreet_Walia LUPUS UK]

Hi Joedel,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack that contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request our information pack, please click here: lupusuk.org.uk/request-info...

An increased sensitivity to light is a common symptom of lupus. Sunlight can cause people with lupus to experience rashes, nausea, headaches and joint pains; joints can become tender to touch and can become swollen. We published a factsheet on ‘LUPUS: and Light Sensitivity’ which you can read here: lupusuk.org.uk/wp-content/u...

If you need more information about artificial lighting and ways that you can help to protect yourself from it, we published an article which covered this last year: lupusuk.org.uk/coping-with-...

We published a factsheet on ‘LUPUS: an Men’ which you may like to read here: lupusuk.org.uk/wp-content/u...

Also, we published a guide on lupus and the skin which I hope you find useful: lupusuk.org.uk/wp-content/u...

There are several triggers of lupus such as: UV exposure, virus, hormonal changes, stress and trauma. There are a number of people who believe their lupus was triggered by a stressful event, although it is not possible to know for sure. Managing stress levels should be an important aspect of health care for anyone with lupus. You may like to read out blog article on stress management and relaxation here: lupusuk.org.uk/stress-manag...

Please keep us updated, wishing you all the best.