Problems with the sun with SLE

My daughter was diagnosed with SLE when she was 7. Only since having her daughter and now being 25 does she have problems with the sun. If she does have to go out in it she feels as though she has had acid outed on her and it completely drains what little energy she has and makes her really unwell to the point she feels like she is going to pass out. Any help or suggestions would be greatly appreciated

Thankyou

18 Replies

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  • I have severe photosensitive skin due to SLE and get an array of symptoms from migraine, joint pain, pericarditis and rashes. However, since using P20 factor 50 I haven't had the sensation of my skin burning with acid that I used to get. I put loads of the lotion on and wait for it to dry for about 20mins before I go out. Obviously I take other precautions like covering up and avoiding midday sun but the skin burning is significantly better when I use this product. Hope that might be of some help? But just remember, I think it has a flammable ingredient so avoid smoking or flames!!

  • Thank you x

  • Hello tazac

    I v much hope happytulip's P20 factor50 helps prevent your daughter's Hypersensitivity to the sun, or at least damp it down as much as poss

    I just have a question: has your daughter's lupus treatment plan been reviewed in clinic since her pregnancy? I wonder, because hormonal changes can have effects that change lupus inflammatory process....it sounds like pregnancy hormones may have effected your daughter's lupus...which could mean the meds in her treatment plan may need adjusting but her consultant

    Eg My lupus was diagnosed when I was an infant. I am now 63. I experienced an increase in lupus inflammatory process levels when I was an adolescent and during the change of life (the years of perimenopause shifting into menopause)

    ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

  • Her bloods are all over the place at the minute. Her lupus destroys her platelets. They offered her rituxamab which she normally has every 6 months but she refused it as she is breast feeding. Thank you so much for your reply xx

  • She has had a steroid injection and is awaiting MRI and ct scans as she is also having awful headaches xx

  • Poor thing...am v much feeling for you both...must be v hard on you to see her so poorly...especially at such a happy time, with your granddaughter recently born. I'm so sorry you're all going through this. And am v glad her lupus clinic is paying close attention... and working hard to help your daughter. Courage...hang on in there...๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜

  • I agree with everyone else that she should look into if her treatment plan needs to be changed. As I've known women whose lupus didn't become active until after they were pregnant or become more severe. So it could have changed it. Also I have extreme photo sensitivity. To the point if I'm in commercial building with flourescent lighting after a few minutes my eyebrows turn bright red and swollen, like I was stung by bees. If I have to continue to be exposed then the malar rash shows up and sometimes blisters. I recommend wearing a hat as that will help with the scalp burning feeling and hair loss. And cover up as much skin as possible. They make outdoor shirts the UPF fabric I think it's called and it had sun protection built in. But good treatment is key. I was still having a lot of symptoms and we added additional immune suppression to my infusions. Last month I was able to get pushed in my wheelchair our in the sun for short periods without the acid burn feeling or getting a horrible rash. So the right combination of treatment could be key. Before I would also get exhausted and lethargic like that after sun exposure, to the point I couldn't speak right or be fully coherent, my husband wouldn't know what was going on with me. Then we found out that I have lupus and that it's all part of it. I hope some of these ideas from everyone helps.

  • She has had a steroid injection and is awaiting MRI and ct scans as she is also having awful headaches. Hope your getting sorted. Thank you so much for your reply xx

  • Unfortunately, there is very little she can do except to avoid the sun as much as possible. I retired early due to my having lupus (I am a retired Neuro-Ophthalmologist); I also must avoid the sun as much as possible. No one knows for sure why the sun can cause severe flare ups in people with lupus such as rashes and major fatigue and multiple other problems as well - for people with normal immune systems, the sun helps to enhance the well being of your immune system. If your daughter is as bad as you state about being in the sun, then she should limit here exposure to no more than 10-15/PER WEEK. She should cover as much as her body as possible and use a high UVA-UVB sunscreen blocker on the exposed parts of her body when in the sun.

    Because she will be avoiding the sun it is very important to get her vitamin D levels checked via blood work. I can almost guarantee that she will need to take vitamin D3 capsules everyday (usually around 5,000 units)........normally the body utilizes the sun to produce vitamin D.......which she will not be able to do.

    Dr.S. (in the USA)

    P.S. The number one complaint with people that have lupus is overwhelming fatigue.

  • I meant to say 10-15 MINUTES PER WEEK.

    Dr. S.

  • Thank you so much for replying. Her main symptoms are major fatigue and rib pain normally. We've tried high factor sun cream and she is always covered from head to toe and it still deletes her energy. Her rheumatologist isn't very sympathetic so just wanted some suggestions. Thank you xx

  • So sorry. I suffer too. I suffered from "sun poisoning" as a child. Turns out it was lupus. I'm 53 now and still can't tolerate it. Factor 50, UVA/UVB proof parasols, sun protective clothing is available but expensive. The fatigue happens in spite of all of the above. Tell her to try and do outdoor things before 11 or after 4. Medication adjustment can help too. Good luck

  • I too have lupus with serious sun sensitivity. Not only do i have to avoid the sun, but I react as badly to florescent lights which also produce a high UV level. I have to be cautious about spending time in stores with a lot of florescent lighting. I have a local UV monitor website i check every day. I'm usually stuck inside from 10am to 4pm. In the summer it can be worse. Winter, with it's low UVs, has become my favorite season.

  • Tazac......I am assuming your daughter has been put on an immunosupressive medication such as azathioprine or mycophenolate 9theses are steroid sparing drugs - meaning you need less steroid for optimum response. If her symptoms are as bad as you state then often a low dose of prednisone is added (ideally NO MORE than 7.5 mg......but try to get to 5mg/day (that dose will minimize long term side effects). Almost all Rheumatologists in the USA put their lupus patients on Plaquenil (it is an antimalarial drug) because it has been shown to reduce the chance of a vasculitis as well as been proven to increase one's lifespan. If 200mg once a day does not help (usually after 3 months) then it is given twice a day approx. 12 hours apart - many lupus patients do well on plaquenil alone.

    I assume your Rheumatologist has done all the necessary blood work .e., ESR, CRP, dsDNA,

    ANA, Anti-phospholipid antibodies, Chromatin antibody, Coombs antibody, AND ESPECIALLY Ribosomal P antibody WHICH IS 100% SPECIFIC FOR SLE.......systemic lupus erythematosus.

    Dr. S.

    P.S. Many people with lupus will get what we call lupus headaches which will NOT respond to a narcotic pain killer (one of the many ways to determine if it is a lupus headache). Some people will get some relief from ibuprofen and fioricet.

    If I can be of any help, please don't hesitate to contact me. Please remember I can only give you information, only your Dr. can determine how to treat.

  • Hi there, I am also very photosensitive skin due to SLE and if I go out in the sun my skin feels as if its got acid on it, it feel like a million stinging ants biting you all over the areas exposed to the sun. I hung the washing on the line the other day it was cloudy and I thought to myself lets just have a sit out here for a little. 20 mins later i went in. My husband came home and looked at me I had turned bright red, shaking and bam a major flare took hold and I have a seizure and was unconciuos for 10 mins. the ambulance arrived and I was rushed to hosp. I swelled up one foot was huge and they couldn't believe the Sun reaction. medication for Lupus can make you more sensitive to the Sun but I never have reacted like this before. Take care the heat and sun does crazy things to a Lupus sufferer. I hope your daughter is feeling better x

  • Thank you for your reply. Lupus is an awful disease and it's very difficult to explain it to people. Hope your recovering well. Take care xx

  • Hi Tazac,

    Many people with lupus experience a flare of their symptoms when exposed to sunlight. Sunlight can cause people with lupus to develop migraine, nausea, joint pains and rashes all over their body including their face. We published a blog article on coping with light sensitivity which I hope will be of help to both you and your daughter: lupusuk.org.uk/coping-with-...

  • Thank you

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