Photosensitivity!

[RosieA]

Over the last month or so I have become photosensitive and a dermatologist has confirmed my response as a malar rash. Today I went out at 9.00 to walk the dog. Sun hat on, 50F, long sleeves etc. No sunglasses -I'm still not thinking! Got mild headache and felt so exhausted I ended up in bed this afternoon, sleeping for over an hour (unheard of for me). Could going out without glasses cause this? Does photosensitivty include the eyes? Or just bad luck and a coincidence? - I know I'm entering a new world but am becomming quite unsettled. Any ideas would help. Many thanks

[Spanielmadlady]

Hi.do you take any meds that can cause photosensitivty? . UV is all around so to avoid it completely you have to stay indoors away from windows .fluencencent lights can also cause it.i have some uv photosensitivty and get a headache after about 30 mins outside if I dont wear a hat.my joints also ache and I feel very tired but it all eases after a few days indoors.i take 2 drugs which can cause uv ps and despite having reaction casein my glasses my eyes flare up and burn .eye drops usually help soothe x

[RosieA in reply to Spanielmadlady]

The joints aching and tiredness sound very familiar. Yes, I take hydroxychloroquine but since it was a malar rash the dermatologist has actually doubled my dose (above that recommended for my weight) as she said it would increase protection during the summer months and to reduce in the winter. I must admit to feeling better now, having slept and not been in the sun since 10.00 am. It's a huge adjustment isn't it! I have been fortunate to live my life without headaches, without ever sleeping in the afternoon. I think a new way of life is ahead of me. Thank you for your reply and will try eye drops next time. x

[Spanielmadlady in reply to RosieA]

Hydroxychloroquine is known to induce photo sensitivity. I take hydroxychloroquine and azithromycin so I've got a double whammy.i use a simple hypomellose eye drops.i often nap during the day I used to feel guilty but I've realised by going with the flow of what my body needs it gives me a boost for the rest of the day. Have a peaceful evening x

Dont forget your eye tests with the hydroxychloroquine 👀 xx

[KayHimm in reply to RosieA]

RosieA -

If your dermatologist confirmed photosensitivity malar rash, you should take that very seriously. I have a pretty high degree of photosensitivity but the flat rash on my cheeks - even after sun exposure - has never been confirmed as the lupus malar rash. My rheumatologist says most of the rashes he has seen over his many years are not the butterfly rash.

The rash can also reflect disease activity. You noticed the increase in joint pain and fatigue as well.

Take the advice of people here. Yes, you need sunglasses. You probably should have a hat with a face cover. I have done much better this summer with my new hat.

Best of luck. No ☀️!

Xk

[RosieA in reply to KayHimm]

Thank you KayHimm, I have not been diagnosed with Lupus yet! At the moment the diagnosis (early days) is inflammatory arthritis with Sicca, UCTD. All the dermatologist would say is that it was a malar rash, Lupus like, not cutaneous lupus and that the rhuematologist would have the final say on diagnosis.

I think a new hat is a must, alongside a hat for the winter with a built in sunfactor - I've seen some which are also waterproof. I have also sourced some mineral suncreen which is seemingly better than some suncreams which can make my skin very hot and itchy.

I thought (perhaps wrongly) that upto 60% of people with Lupus would present with a Malar rash at some point. What a bother, these rashes have only appeared since July.

I will dig out the sunglasses this morning - first job. I do feel stronger though, so I think the sun exposure did me no favours, although it was a beautiful walk. Kindest wishes x

[Frosty1960 in reply to RosieA]

Take a look at the eclipse site linked to here lot of usefull information on there.

[RosieA in reply to Frosty1960]

Thank you. I have peeped at it already. I have found some hats through them that should see me through my winter dog walking. They have a sun factor in them as well as being waterproof. Perfect. x

[KayHimm in reply to RosieA]

Yes, that sounds right - about half of lupus patients get the butterfly rash. From what I have read, it is highly significant when diagnosed accurately. Very important. A dermatologist or a rheumatologist are usually able to tell the difference between the malar rash of lupus and rosacea and other conditions.

Photosensitivity is not uncommon with UCTD. You absolutely must take precautions.

Xk

[RosieA in reply to KayHimm]

I have tried to read about UCTD and find guidance for diagnosis - all seems a little random and some seem to be identical to Lupus! I feel that over this year some symptoms have either been brought under some control with the meds, e.g joints, dry eyes whereas others appear to be emerging -such as general malaise, as well as bouts of extreme fatique, the photosensitivity and underside of my feet continually feel as though they have undergone rigorous torture. Is this common? Feeling a little adrift after dermatologist saying it was a malar rash and waiting for a Rhuemy appointment. Do you get a malar rash with UCTD or is it a red flag for Lupus? So sorry probably too many questions.

Am going to spend day productively researching best pillow for dodgy neck! I think I recollect someone posting about a pillow for sale at John Lewis - I think a purusal with a cuppa is in order. So many thanks for your responses. They are helping to keep me sane. x

[KayHimm in reply to RosieA]

Maybe think of UCTD as a patient who has a little of this, little of that, not enough in the mix to give one label to.

Yes, a sun-induced malar rash that a dermatologist - not attributed to rosacea or something else - would be a lupus symptom. But that has to be put in context. The person would need other signs like positive ANA, blood abnormalities, inflammation in organs to have a diagnosis of lupus.

If you read the one article by Mitnick and Askanase, you will see how the diagnosis and treatment are made. Yes, certain things like anti-DNA and the malar rash bias them toward lupus. So maybe « red flag » is apt.

Your Sjogren’s is a good example of another symptom that is not specific for lupus but is consistent with CTD and maybe lupus patients - also UCTD and others - get it.

Good question about the malar rash. It gets six points on the new lupus classification. So if you a person has a definitive malar rash, it would not take many more symptoms to complete the picture.

What are your other symptoms and labs? A good article is: ANA-négative lupus by Michael Lockshin. Even if that is not your case, you can hear how the patients in the grey area are labeled. A lot is a question of a doctor’s style. He always emphasizes that the label is not important. Knowing the patient is.

Questions are always welcome! We aren’t doctors but have a lot of collective experience.

Xk

[RosieA in reply to KayHimm]

Hum! An interesting read. I am ANA +ve and the only remarkable thing in my bloods has been low nuetrophils. Otherwise, I am consistently normal. Having said that the dermatologist has ordered new ANA and ENA panel. Rheumatologist has been great and I know that symptoms have been evolving slowly, so started with enormous fatique, then no less than 11 small joints, intermittent swelling of lymph node on neck, dry eyes, some diffuse hair loss around one temple (seen and agreed by dermatologist) and now diagnosed with photosensitivity with malar rash. One urine test detected some protein loss from kidney, the next one was clear. Dermatologist confirmed it was not cutaneous lupus. It does appear that UCTD appears to be milder in it's form so would be very content with that!! Although just two years ago I never thought I would say such a thing.

People on the site have been great. I have indeed learned a lot and have been greatly supported. Thank you once more. xx

[KayHimm in reply to RosieA]

RosieA -

You sound pretty typical of UCTD. The issue with you would be that the rash and protein in urine putting you more in the lupus category. So they have to watch you closely.

I had protein and red cells in my urine when I was young. I had to have urinalyses done all the time. Have you had a 24-hour test for protein?

[RosieA in reply to KayHimm]

No, but suspect that test will be on the card at some point. Managed to get through all my physio muscle building exercises today, whilst watching Father Brown, so feeling quite self rightous. I also managed to walk the dog without having to spend the afternoon in bed. A very overcast day helped I think alongside increasing my Prednisolone as advised by the specialist nurse. Thanks you again. I shall continue my reading on UCTD x

[Clairedown]

Hello Rosie. Photosensitivity does take some managing. Although I have a fairly recent diagnosis of Lupus I have been managing the rash and tiredness for about 40 years. The main thing I have learnt that it is not just the sun. Although the sun is the obvious risk, bright light outdoors at any time can cause a problem. I also have to be careful of some indoor lighting, sitting in windows and the light from the computer. I have some wonderful clothing like bamboo gloves, a neck covering which tucks inside long sleeve tee shirts, and clothing that is thickly woven. This has made so much difference. I have bought things from Solbari and although they are expensive I think they have been worth every penny.

I have learnt to be careful about socks that leave a gap on my ankles when I sit down - a two inch rash round your leg irritates for days. Also of course good hat and sunglasses. Although I think I look a bit freakish when everyone is in sleeveless shirts and shorts I usually think dressing correctly is worth the trouble so I can get out safely.

It has taken me a long time but I am much better about respecting the tiredness. I also think it is good to tell friends so they automatically give you the shady seat or offer to sit inside rather than in the full sun. I wish you well and hope you will feel you are among friends that share your discomfort but also manage to live normal lives whilst covering up. Claire

[RosieA in reply to Clairedown]

Oh thank you Claire. It certainly is a learning curve. Gosh, you are certainly very photosensitive. I think, I had not appreciated until very recently the link between my malar rash and the exhaustion I felt the day after sun exposure. As you say, learning to respect the tiredness is crucial and a great way of looking at it. I think I have been guitly of thinking - pull your socks up and push through it. I realise I can't and to try and do so is counter productive. It just goes so against the grain. I lay in bed, yesterday at 3.00 pm and just before I nodded off I was listening to folks pottering around our hamlet and realised I was a little jealous of their freedom - pathetic, I know.

I now need to focus on endeavouring to make myself safe and to enjoy the outside without such dreadful consequences. I am hoping to walk the dog tomorrow, hat, 50F and glasses (even if it is raining) and see if that makes the difference.

I will check our Sobari, thank you for your thoughtful response. Kindest wishes. x

[KayHimm in reply to RosieA]

Solbari is great. Also, check out Solumbra and Coolibar. They have different items - some that make a huge difference like the hat with face shield and swim head covers.

@Clairedown made many good points. The level of photosensitivity and type of light varies a lot. And I have appreciated so much when people put me in the shady area, give up their sit or tell me to get my hat.

Xk