I've got a Rheumatology appointment tomorrow and a Dermatology appointment next week. My brand of photosensitivity is a major question.
Do any of you experience this?
1) Bright red burn of any exposed skin in 10 mins or less, which then stings like a 'real sunburn' for about an hour before both disappear completely.
2) Burning sensation on skin through clothing, including SPF50 clothing and some driving gloves.
3) Scorching, as if by a magnifying glass, through windows on bare skin and through clothing. It happens even when I put a wool blanket over my jeans(!). The sunlight still burns through creating an uncomfortable feeling, less severe than the scorching one, but one that means I have to move from any rays of sun inside or out.
I have all the precautionary stuff and I know about UV filters for windows/cars, but my UV gloves don't work fully when the light comes through windows, so just wondering if anyone else experiences this where some UV blocks don't work? If so, what tests did you have? Light testing for different rays beyond UVA/B like infrared, blue light..? Are you taking any treatment that works?
I've got a baby pram umbrella (UVA/B blocker) that does work inside/outside, but I was hoping once we got in control of the UCTD with meds (lots of symptoms gone now after 1+ years of meds) that the sun sensitivity would go too. But no such luck... It seems worse this year. So I'm wondering that it's not caused by CTD but something else entirely. I'm already medicated for Mast Cell Activation Disorder and though that's working for the rashes and urticaria, it's not touching this either.
Anyone? Feeling a bit desperate for ideas since my Rheumy has done all she can, but my Dermy might be able to do more if I have a direction. I really, really don't want to resort to having to make my own astronaut suits from old baby prams... : )
Panda x
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Do you see an immunologist? The guy I saw who has researched mast cells for thirty years uses Cyclosporine with his autoimmune MCAD patients who are severely affected. What you are describing seems like a reaction to intense heat. Like you, I had rashes and that can be confusing because of our photosensitivity. But my rash turned out to be flushing. Have you had the 24 hour test and the tryptase test along with the other blood tests? Such a hard problem. Wishing you luck. K
No immunologist in my area. But I don't see why I couldn't be referred further afield. Good idea! I will put that in my back pocket if I get no joy with the Dermatologist. I would say the above is not a rash (it is exactly like a sun burn, but it can't be that either because it disappears far too quickly). If stayed out longer, I think I would blister. I just can't stand it long enough to find out though.
I will also look into the Tryptase test and ask for it if it matches much of what I have. What is the 24 hour test? Is it for the Porphirias? Because I JUST found this information a few days ago about a Cutaneous Porphyria called EPP (Erythropoietic Protophorphyria). It's mostly in infants, but does crop up in the rare adult. I'll post it in case anyone else has something similar. It would be a LONG shot if it was this, but the symptoms are the closest I've found to mine it's identified by blood test.
"...As blood passes through the skin, the protoporphyrin absorbs the energy from sunlight and this sets off a chemical reaction that can slightly damage surrounding tissues. The nerve endings in the skin interpret this as itching or burning pain... The light that protoporphyrin absorbs is different from that which causes ordinary sunburn. Usually sunburn is caused by the shorter wavelengths of ultraviolet light (UVB), but in EPP the skin is more sensitive to longer ultraviolet wavelengths (UVA) and to visible light...
...The symptoms of EPP...typically start with abnormal sensitivity to sunlight. Exposure to sunlight causes tingling, itching or burning, which may be associated with redness and swelling. These symptoms usually occur within a few minutes of skin exposure to sunlight, and often take hours or days to resolve.... The light producing these changes need not be direct – light reflected off water and sand, or passing through window glass, including car windscreens, can also cause the symptoms....
...As EPP...affect the production of haemoglobin, it is not uncommon for people with EPP to be slightly anaemic..."
(A couple months ago my bloods were slightly anaemic.)
Thanks again Kay. I've got some suggestions now which always helps when I get the blank stare or get told to use UV filters, wear the clothing, etc. Or that I simply could not be burning through jeans! But I am...
Maybe mention getting a referral to an immunologist at both appointments. MCAD is a newly described illness, and there are very few immunologists with the experience with it. The 24 hour test involves a leucotriene test that my doctor didn’t think labs did in New York. And it isn’t just the testing but the recognition of the syndrome. Do you have GI issues, food allergies, hives?
I will look around a bit. Message the big cities you live close to.
Yes, smart, Kay. I will try to slip it in tomorrow with the Rheumatologist. Although I'm also broaching the HUGE breast explant topic with her. This feels like the biggest appt with her so far!
My Rheumy is on board with the idea of the Mast Cell disorder, but it got left in limbo because the junior Dermatologist who was guessing at it has moved away before any testing. He had put me on a Leukotriene inhibitor with antihistamines. And these stopped my spontaneous year long out-breaks of hives and florid urticarial vasculitis reactions. So, the Leukotriene testing sounds important for me.
Absolutely no food allergies. No hay fever or other allergies. GI troubles started just months after this all started for me. Constipation -- rabbit pellets. (Never had it before.) That's gone now with my MMF treatment, but when I was off it for a month last summer, the constipation came straight back. So I suspect it's still lurking in the background.
I feel really grateful for this immunologist thought, Kay. I think there's a teaching hospital about 5 hours away. I had looked this up long ago, but had utterly forgot about it once I was in the system.
I'm on ciclosporine for SCLE..prescribed by my dermatologist n it's helping my many varied skin issues!! Alongside loads of other meds I might add!! Xx
Hi, that's great to know it's helping you! Someone I know is also on cyclosporine and it makes a real difference for him too. Do you know if Cyclosporine can be taken alongside Mycophenolate and Hydroxychloroquine? P x
I'm taking hydroxychloroquine as well..n steroids which I have problems reducing..so I'm staying at 10mgs for now!! My dermy is wanting me to increase ciclosporine n has prescribed the increase but I've got increased blood pressure at the moment which I had to check because it's a possible side effect..so now I'm taking med to bring bp down before I increase ciclosporine!! Hope that makes sense!! I did have problems taking it at first..the pills r like silver bullets n I found them really hard to swallow..but perseverance paid off n I'm ok on them now..u have to have regular blood tests during treatment to keep an eye on liver n kidney functioning. Xx
Sounds like I'd probably have to swap over my Mycophenolate for the Cyclosporine, though it's a good question for my Rheumy later this aft and/or Dermy next week. Myco has the same regular blood testing bi-weekly and the pills are horse's teeth. So I'm used to the routine.
Sorry your suffering if I go out in sunlight without factor 30 min and a hat after 5/10 mins my face starts to sting and dry out no fun at all I’m a carpenter and no longer put roofs on due to photosensitivity
Der had not finished I’m off for 2 weeks building a bakery for my daughter and past two days in the sun have not been fun I’m covered in factor 30 and making lots of dust 😂😂😂😂looks like I’ve been tarred and featured at the end of play 😳
Oh dear, Ian! That also does NOT sound like a nice day in the sun!! You and me both! And, yes, like you, the Factor + sunscreen does stop the bright red colour from appearing, but doesn't stop the feeling of the burn for me after about 10 mins. I don't know how you're managing that building work. That's just straight up fatherly love...
I've found 70 and 100 Factor helioplex uva/b sunscreen by Neutrogena. It's pricey at about £20 with shipping, but it actually doesn't create the gooey sticky palate for the tarring and feathering! It might be an option for you?
I have to use Zinc Oxide if I'm anywhere near the sea or cliffs which is definitely a tar and feathering attractant... : ) Hope you manage through these sunny days.
When we used to go on holiday I always had a chest infection which I’ve been told is probably due to the photosensitivey and mixed connective tissue I’ve kept out of the sun for the last 4 yrs I’m building my daughter a bakery ( she has a vegan bakery business and has out grown our kitchen) and guess what 4 days in the sun I’ve got a chest infection fan ****** tastic 🤬
Oh no, Ian. That's worse than just a tar and feathering! So sorry. I don't even know what to say, because that doesn't happen to me, nor has Wendy heard of it. You are unique. Please take that as a compliment. : )
Oooo Tufty.. Do you have EPP?? I had never heard of it before a week ago.
I actually found that exact article with the same paragraph on sunscreen. I just hadn't copied and pasted that part. The article is highlighted above from the British Skin Foundation.
Thankfully I have instinctively found my own way to protect myself last summer by sourcing some skin coloured zinc oxide as mentioned below in my response to Ian. My regular sunscreen is also a uva/b helioplex blocker, but doesn't block visual light. I actually have no idea if I have EPP. It is unbelievably rare, so I doubt it, but I was quite taken by how closely it resembled what I am going through, that I thought I'd post it here and see if anyone related.
If you are experiencing something similar, or actual EPP, can you say how it manifests? How you were diagnosed, etc? Thanks for your response.
Hi panda, I have been putting steroid cream on mine. It really helps relieve it. I get very red burns within 2 to 3 minutes with factor 50 on. My burns last for days, often getting worse after a day or two and are definitely caused or at least exaserbated by indoor lighting. I often get red sores on my skin afterward that last for a week or two also. I have learnt that light equals nausea, fatigue, breathing difficulties, chest pain and coughing for me, so I try to protect myself from it now I am aware of it. I have proper uv blocking glasses from the optometrist, wear a 30+ foundation powder on my face, sports 50+ sunscreen, a hat indoors and out and and Kay Himm suggested lips also, so I bought a chapstick that is 30+ from the chemist. I have also had my car tinted and bought a parasol. Basically trying to ensure all avenues of exposure are covered! Lulu.
Wow Lulu, You are going through it too! It is a full on rigamarole, isn't it!! I have all the accoutrements you list here. We can be our own little travelling bands! I show up with baby pram parasol everywhere I go and am going to take it to my Rheumy appointment today to show it is the ONLY thing that blocks the sunlight for me. I use the 30+ chapstick and my lips buzz like mad after, but they don't burn.
I don't get the sores that you get, and that sounds terrible that they last for a week or two. I'm glad the steroid cream makes a difference for that. Plus you seem to get the typical photosensitivity response associated with Lupus where you feel nauseous, fatigue and breathing difficulties. I thankfully don't get any of that either.... So I feel like I'm way better off than you are. But this burning through clothing is becoming quite a mystery, unless it's something else, I feel.
It sounds like you have it all covered! I tried a steroid cream in desperation. It is mild I think (hydrocortisone 0.5%) and it really calmed it down. Lulu.
I think photo-sensitivity is on a spectrum. I know people with lupus who have no issue with the sun and can wear "normal" clothes and take no precautions. There there's the other end of the spectrum where people are VERY photo-sensitive.
I am towards the very end of the VERY photo-senstive.
In was anti-RO positive at diagnosis which indicates strong photo-sensitivity.
I am now 5.5 years since diagnosis and that has been a huge learning curve. No-one can tell you at the beginning when you are diagnosed, how photo-sensitive you will be. It's unfortunately a case of trial and error.
I now know what precautions I must take.
None of my body is ever exposed to the sun. I wear long sleeved SPF 50+ tops every day from roughly April/May until the end of September. This means that my arms, chest and back are full covered and protected. I wear jeans or trousers, that the sun can't come through. If you hold your clothes up to the light and the sun comes through them, they are not offering you enough protection. A white t-shirt for example only offers SPF 5 and if it gets wet swimming etc, it's less than SPF 5.
The only parts of me that see the sun are my face, hands and my feet when I feel brave enough to wear sandals.
I have been told that I need to wear a hat every single time I go outside, summer and winter. So I have brought a selection of hats.
Of courses sun glasses are a must too - as I really am intolerant of the sun in my eyes these days too.
Face is covered every single day in SPF 50+ cream.
Hands and feet must have SPF 50+ cream when exposed on hot sunny days.
So my body, after 5 years of hiding from the sun is very white!
BUT I live by the sea and have 3 children, so I can still go to the beach or for a walk, with my precautions. And we go on holiday abroad. For these I tend to use a large floppy hat, an umbrella made of SPF 50+ material or a beach tent with SPF 50+ protection.
It's difficult to get it right in the summer but hey ho, that's lupus.
If I forget to put cream on, the bits exposed go red and get a rash VERY quickly.
As far as I know, people with lupus and photo-sensitivity are not supposed to sun bathe.
I take 400mg hydroxychloroquine a day, 3g of MMF a day and 50mg of Mepacrine 3 times per week.
The hydroxy should help a little with the sun in summer months however, it will not change you from photo-sensitive or NOT photo-sensitive. The sun will always be a trigger for you.
Plus, as far as I know the illness and some of these immune suppressants make you more prone to skin cancer.
So, you must take care not to burn.
And for me the sun can not only be a trigger for skin issues but it can set off a full flare of all my lupus symptoms.
It's difficult to accept and the remembering a hat every time I go out is annoying but I don't have much choice.
Wendy, thank you so so much for taking the time to reply here. Your post is full of very pertinent information for us sun sensitive folk. I'm also Ro+, so we just prove the point further, I think.
And I sure can relate to the distress of finding out what photosensitivity really means for a lifetime. It's been 2 and a half years for me and medications have not touched the sun issues, despite correcting many of my other symptoms. So I am adjusting to the fact this really is a lifetime thing. I also live by the sea, so I know how shocking it is when it first starts happening. You sound like you have it under good control.
Weirdly, though, I AM feeling burning through my jeans and covers (except for the baby pram umbrella). There is the question of whether it's a heat sensation or if light is getting through. I put a wool blanket over top of my jeans and I still feel the burn. It's not going to kill me kind of burn with that much on me, but something out of the ordinary seems to be happening. Especially through windows. And I don't hear that anyone else is experiencing this, so it is why I want to ask to be tested for the Erythropoietic Protoporphyria. I know it's a LONG shot, but worth a try. ??
Just wondering, has the Ro+ manifested in any other ways for you that you know of? And do you know if you're RO 52 or 60? I want to research these once I find out what I am. Hopefully my Rheumy will tell me later today!
Seriously, thanks for the scads of super-pertinent info.
I still get a horrible tingling sensation if I do sit out in the sun. So for example, last year at daughter's sport's day, sat out for about 3 hours in midday sun, completely covered, but no parasol - as sat in a crowd and couldn't keep it up for blocking views and couldn't face standing for that long. I had like a burning sensation. I had a chat with a few here about it. We decided it was my nerves reaction to the heat? I am not good in the heat now either. So not just photo-sensitive but the heat makes me unsettled and feel ill too. Does that make sense?
I used to love summer. It still is my favourite season. Living in Wales, we get more than our fair share of rain and the winter isn't good for me as I feel the cold so badly now. So still like summer, it's just never going to be the same again. Of course kids and hubby love summer living by the sea.
I have a friend with lupus who was photo-sensitive and she had UV treatment - I cannot remember exactly what it was called. But she used to get urticaria with the sun. Anyway it worked for her. She had her first holiday abroad for years and years and was fine. She doesn't have to cover up like me and can wear sheer blouses and short sleeve tops etc.
Sometimes I feel like a freak with my covering up! In fact there is a parent of a child in my daughter's class, that walked past me one day and she looked at me and sniggered and said, "what no hat today?" And walked off laughing at me. I had genuinely forgotten that day and put my hand up to check my head, I had forgotten my hat. But now every time she walks passed me she openly laughs at me.
I know it's her who's got the problem and she is obviously ignorant but it hurts sometimes. That invisible illness. People wouldn't laugh with other chronic illnesses would they?
I think sometimes I cope well with all of this but then at times, it just gets to you and you think, I just want to be normal! I want to wear shorts and strappy vests and forget my hat and wear sandals and sit outside in the sun.
Yes, nerves and heat are what I've been talking with Kay about regarding this too and I think there is something to this, which also seems to be connected to light too. My lips buzz especially after just being outside for a few minutes, hanging clothes on the line, sweeping a patio; and then I'll get electric shocks in my legs or feet hours later. I wasn't sure what was connected to what, but it's getting more clear.
I totally understand what you're saying regarding invisible illness and how it can get to you sometimes. Shame on that woman with her hat comments. I'm sure you're good at letting this stuff roll off you, but I get it how it goes in sometimes and undermines us.
God, I know what you mean about the wistfulness about what you want to wear in the summer! I think I'm going to do it for just one free minute and race around my garden in flip-flops and flimsies, then run for cover... Sad we are...
I know how you feel. I walked to my yoga class on Wednesday and when I got there one of the others said ‘ oh I thought that you you I passed, all wrapped up and wearing a hat!’ Cue hilarious laughter. I just said it was not easy being sun sensitive, even in Scotland.
It’s not nice is it? You wouldn’t laugh at someone in a wheelchair. But it’s just ignorance. Like you say, sometimes you can say something and sometimes you just can’t be bothered. And yes, even living in Wales and Scotland is a challenge. How do people manage this illness living in hotter climes???
By the way, I have also had a bad reaction to blue light at the dentist.
You know they use those blue lights for setting fillings now? Years ago you were told to eat soft food for 12 hours to allow it to set, but now they use those lights to set them immediately.
I had a very deep filling, I nearly lost the tooth, so the dentist did it in layers and used the setting lamp many many times as he went.
I didn't think anything of it. Although I am photo-sensitive, I had never been in this situation since diagnosis.
But I was so unwell that night and for a few days after. It made me feel sick and dizzy and I was unsettled, wasn't happy sitting or standing or walking. I didn't know what to do with myself. I couldn't sleep either.
After a bit of research I realised what it was and chatted to my husband. We ended up thinking that the blue light did it and because it was used inside my mouth I had absorbed a lot of the blue UV light.
I explained to my dentist and frightened the poor man. He had never had this happen to a patient before and he is very weary of the way he treats me now. Last time he switched the overhead light and room lights off for me. I wore a hat in the chair. He says that he doesn't need to do any fillings again, for the foreseeable future.
And this is very interesting too. I actually had the old mercury filling put in only a month ago because the dentist was worried about the white one breaking again. So I didn't have the blue light this time. I would have been curious to know how that would have affected me too. Good point!
I'm hoping they will offer light testing to me and I should then see if blue light is a problem for me or not. Have you had light testing?
Ha ha! Are you joking? I don't get much by way of NHS treatment. I was discharged by NHS rheumy in September 2017 and only just got back on the NHS patient list. I live in Wales and either they don't get lupus or they just want to limit costs. We are battling to get them to comply with the BSR Guidelines for lupus and sjogrens. I guess if I wanted this explored properly, I'd have to get the tests done privately when I see my lupus expert in London. x
Ah! Sorry Wendy! Should have known better.... I know what struggle you're amidst to get the right help out there. If they do it for me, I think the test is in Wales... (Cardiff) ironically! I will report and see if it gives any earth-shattering info. I'm not sure even if they did say I was unable to be in this light or that, that it would change much for way of life anyway. I seem destined to be wed to my brolly... But if there's a way of helping with this (like your friend's astonishing result), I'm going to try for it. I'm amazed they did phototherapy (where they desensitise you with uv rays) with someone with Lupus. I was told it was no no for anyone with connective tissue disease who was light sensitive. I don't believe anyone anymore except myself and you guys!
I'd be lost without this site! I don't get here as often as I would like. I often see posts that I want to reply to but don't get chance to come back or can't find when I get here. These people are amazing! They say people who are members of a support group are generally better informed about their illness and have a better outcome, which makes total sense with this group here.
Any info you get about lupus and UV and test etc, please keep me posted.
My memory is bad at the moment, are you in Wales too?
Wendy, I would be lost without this place too. People here have really helped me consolidate my thoughts for the Rheumatology appointment I just got home from and all my previous ones since I found the site. Will report in a minute regarding the sun issues. But I agree completely that we've got a great chance to have a better outcome due to being involved in a group. We inspire each other to ask things of professionals and share more deeply with them what we would otherwise probably not.
I'm in Cornwall. But nearest light testing I was told was 5 hours away in Cardiff.
SOOOOO....one down, one to go! Dermy next week. And I just got back from my Rheumy appt now. It was really good! With regards to my particular sun issues, she also wondered, as I have, that it was not necessarily a CTD reaction. I handed her my Erythropoietic Protoporphyria page and she said that actually the porphyrias had crossed her mind at my last visit. She would write to the Dermatologist and suggest testing for it! AND she said we'd get immunology involved if we got nowhere with this and whatever Dermatology suggests at the appt.
So there's hope on the horizon. And I feel all the better for it!
Thanks everyone for your input all along here. So appreciated.
Your great detective work and persistence resulted in a productive appointment. I am feeling more confident they are going to get to the bottom of your intense light/sun reaction. Sounds like the doctor agrees with us 😅 that it is not typical of photosensitivity from CTD. But these things can be weirdly related.
Glad she is open to referring you to immunology if the tests don’t point to a diagnosis.
Thanks Kay! Especially thanks to you...... : ) For helping me dig deeper and not question my questions. Even if this is a dead end, this has given me some real confidence in how important my own input is in my own health!
It was great to feel like my doc agreed with us. : )))
Great questions, Tufty! Think it really makes us see how we are just organisms trying to cope with our environments — and some of us don’t do it so well.
Yes! I'm so intrigued as well! It's way way deeper than I ever knew and I'm watching 'Chernobyl' in the background right now, at the same time.......... EEEEEEK!
And what you say about 'under the skin' is so important. Because it's the cellular activity that is unknown in us (exactly how it works that is) that appears to be creating a life of its own in our bodies. And if immunosuppressants can't stop the action and I can't with clothes and all the blockers we've all talked about here and my Dermatologist really doesn't know much about this kind of sensitivity, I am seeing it is up to us to try and find what it is and get support from whatever professional we can along the way to get our answers. Maybe we'll help discover new stuff?
Aloha...I also suffer from what you are describing, and I don't have an answer. MCAD is one thing that has come up a few times so I would definitely lean in that direction. Wishing you the best of luck and let us know .
Wow! You too?! Can you tell me how yours started and for how long you've had this extreme sensitivity? Have they ever tested you for porphyrias? Sorry for all the questions, I'm just so interested!
I am being treated for MCAD (with Leukotriene inhibitors and 2-4 antihistamines/day) despite not being properly diagnosed with it. So when I asked my Rheumatologist on Wednesday about Mast Cell, she said that since I'm still getting this reaction while having been on MCAD meds for a year, it was unlikely the cause.
Thanks for responding and I'm very curious about your experience.
So interesting the crazy reactions we get. As Panda knows, they ruled out MCAD with me too. My reactions turned out to be neurological, although with an inflammatory component. Have you gone through the mast cell work up yet?
And I second the question around nerve involvement certainly for me too. I think you had a super team, Kay, to figure you out. Wish I was in the US because I'd go wherever you went. But I guess this is a long process of ruling out, ruling in anyway. As well as meds and managing side-effects, etc, etc, etc...
Cvansidener, I just read your profile from 2014 and was amazed to see that you have Urticarial Vasculitis! Because I do too! Something eerily similar going on here... They found mine from a biopsy. I noted you have SLE. I'm in the UCTD category, like Kay is. Your swelling and welts experience from a few years ago could be a Mast Cell reaction. I'm curious too if you've had the tests for that or if they've even just put you on mast cell stabilisers to see how you respond?
Incidentally, since I've been on the mast cell stabilisers, I'm now down to no urticarial rashes and no urticaria at all since January. This is leading me to think MCAD could be part of my diagnosis, but that there is still more considering the sun/light reactions.
Hi Panda. Sorry to be very late to the party but did you get any answers?
I have severe photosensitivity to all visible light and solar urticaria that comes up through Jean's etc so I have to have specialist light blocking creams all year round and have had to massively modify my lifestyle for it.
Anyway to stay relatively brief, if you have not got to the bottom of this and still suffer ask your gp or dermatologist to refer you to the specialist photodermatology team at the St John's Institute of Dermatology at Guys (assuming you are UK). They will do specialist light testing on you to say which wavebands you are reacting to which will help and what sunscreens you need etc. They can also test for EPP and other light related problems. They see a lot of patients referred from the lupus unit so are very familiar with it and related light sensitivities too. If the you need a particular consultants name ask for a referral then tell them to send you to Dr Sarkany's team - they are absolutely amazing. They might well be interested in the MCAS diagnosis as I've just started being tested for this myself and it would be interesting to see if they are linked.
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Lupus and energy saving lightbulbs- they give off uva rays!
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