Hoping that your collective knowledge/experience may answer my querry.
I have only been under Rhuematology for the last 10 months. I am currently diagnosed with Inflammatory arthrits with sicca, UCTD was mentioned during the last consultation. I'm on Hydroxychloroquine and Prednesilone.
On three occasions, within the last two weeks, I have been outside in very cloudy conditions for no more than 30 mins, twice without my hat and latterly with it. (My hat has a 50F in it). Later in the evening, both my cheeks (not the nose) have gone bright red but not the nasolabial fold. By the morning it has reduced to a flush but I feel bushed. I know that HYDO can make you photosensitive but would it restrict itself to the cheeks and not arms, hands, neck? Many thanks in advance if you are able to respond.
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RosieA
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Hi RosieA- yes u r correct that plaquenil can absolutely create issues with your skin. The sun is a BIG no no. I’ve upgraded to methotrexate now but dealt with what you’re taking about and the sun issues. As well the disease itself can cause a lot of skin issues and many are sun related. I wouldn’t even trust sunscreen. A big floppy hat and a long sleeve shirt is a must- and only if u must get in the sun. I could show u pics that would keep u hidden under an umbrella for sure. I’d never want to see anyone go through the skin issues I have. I think maybe your rheumatologist should test a little further if they haven’t already. Sounds a lot like a butterfly lupus rash. Cold compresses can help when your skin actually feels hot as well. I’m not sure how to send pics or attachments but I have the cascade that is usually followed. It may help you understand what to try to push for next, as far as testing. Prayers. 🙏
Thank you, I am hoping that I can remain on HYDROX as METH and LEF were very problematic for me. LEF brought me out in mouth and throat sore within 48 hours. My Rhuemy is great and has done all the bloods. I am ANA+ve but have no other antibodies at present. The reaction is new and I have sent her my mugs shots to add to the jigsaw (I'm just hoping there is an upper limit to the number of pieces. Will now, never go out without 50F on face. Just thought that reaction to HYROXY would not restrict itself to the cheeks but maybe it does. Thank you again for your kind wishes and advice.
Hi. Hydroxychloroquine could be causing you photosensitivity.
Sunblock is your friend, even when its cloudy. Try to avoid sun exposure, wear sunglasses and long sleeve if possible.
Hats are not enough because UV rays hit the ground and are reflected back at you from below your feet.
I am diagnosed with lupus, when I get malar rashes I treat them as any other skin wound. Why don’t you talk to a Dr, nurse or pharmacist, see what they recommend first?
Thank you. Yes, I had forgotten about reflection and am having to re-train myself about routines of applying sunfactor whatever the weather. I am ANA+ve and I am between a rock and a hard place and the other conventional DMARDs have been very difficult to tolerate. I have sent photos to the Consultant. Do you also get fatique with yours? Thank you for your kind advice.
Sorry, got distracted. Am between a rock and a hard place as I would be loath to give up HYDRX because of intolerance of MTX and LEF. Also would, HYRX just could photosensitivty on the cheeks do you think, or as I've read it can cause a drug induced Lupus if your that way inclined. AHHHHHH! All this uncertainty really does your brain no good at all.
Hi Rosie - we all react so differently to each drug. I would stick with Hydroxychloroquine if you can, the skin reaction could be the immune problem, and I am a lot more stable than friends who change prescription. I wear cotton and linen during the warm weather, or bamboo. Natural fibres. At night I burn with fever, face like a lobster. My feet are the worst thing but I put this down to the tiredness which is ever present even with prednisone. I think we just adjust after a time, I use Nivea products or Aveeno on my skin as it really soothes- Dermacool (the strongest version) is very calming as well. Try finding a support group near you or start one up - helped me no end. We phone one another when low or meet and only WE know how so much of our body is breaking down. Good luck and contact me if you need. Cas x
So many thanks for you kind response. I am determined to try and stick with the HYD as I feel it may be helping with the joints, dry eyes and a little with the fatique. I was also getting a very tender lump in my neck but I haven't heard from it in a few weeks. I have sent photos of two seperate occasions of the reaction to my consultant. Factor 50 is now my BFF. Thank you for the face cream suggestions, I think I will need to look at these as am now just using E45. Kindest thoughts x
Aah dry eyes ! You need them to check if you, like me, have Sjogren’s Syndrome - that would explain a lot. It is hand in hand with Lupus and I think causes me more discomfort. Good luck - x
Dry eyes have been a problem for three generations of women in my family. The consultant did the schirmer test which showed very dry in one eye and borderline in the other. I think the HYD is starting to help though - which is great. Will now have to wait for the Consultants opinion. I think Sjogrens likes to hold hands with many other sydromes including RA - what a to do! Many thanks. x
It could be the hydroxychloroquine but equally it could be lupus or ‘lupus-like’ illness causing you to react to the sun. If hydroxychloroquine helps you then stay out of the sun, use high factor sunscreen etc. It’s worth telling your consultant to see what they suggest, especially as it’s on your face like a lupus malar rash.
Thank you, I have sent photos to the consultant and hopefully they will be able to unpick the minefield. Who knew that it could all be so complex. I have not worshipped the sun for many a year but this is a new ball game. Will have to start taking my vit D and calcium supplements now that I can't get my Vit D naturally. Kindest thoughts.
Yes it is and it is quite hard to find information about how it can also cause / exaserbate photosensitivity. Just come home from seeing a friend in the village. Sitting under a tree, with hat on and 50F - here's fingers crossed that all remains well. x
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Possible rash butterfly 🦋 or not 
Is this a Malar rash? 
Lupus & Sjogrens skin rash
Lupus & Rash? 
