Lupus & Sjogrens skin rash

[Haired]

Hi,

Just wondering if anyone can give some tips. I have both Lupus and Sjogrens and photosensitivity for past 7 yrs ( skin rash caused by alergic reaction to PPI for stomach) . It took a lot of trial and error before Dermatologist and rheumatologist found something that worked. On 6 monthly Rituximab Infusions and maintenance, steroids, 5 mg alternate days.

I was with Dermatilogist last week at the time had a few spots on my shoulders she changed cream to Protopic 0.03% from Dermovate. Skin was not burning at the time just a bit itchy.

I am suffering badly in the past few months with photosensitivity especially eyes . I have eye drops and also Heliocare Ultra D tablets which Dermatologists recommended. I have been out working in the garden the past 2 days , not particularly sunny, Well covered long sleeved hoodie and hat. Yesterday evening noticed shoulder itchy. When I checked had lots of new red welts/ rash across shoulders and down back some really burning and itchy. I was covered in rash like this ( legs, arms back) before starting Rituximab.

Is it possible although covered up heat caused re-activation of rash? I had forgotten how sore when it burns.

I would appreciate any thoughts / advice and sorry for long me note.

have a good Bank Holiday week end. Marian

[Lulamay7]

Heat definitely sets off my rashes

[Haired in reply to Lulamay7]

thank you very much for your reply. Have a good week end. X

[Hidden]

Hello Haired. I'm sorry your suffering even though clearly you took precautions not to!

I don't know what else you could do. Maybe wear UV clothing.

It happened to me wearing walking trousers and boots and I still got a rash on my legs! 🙄

Take care

[Haired in reply to Hidden]

Thank you Sylvester66.

I have been looking up the UV clothing. Might order a top for the Summer and see how it goes.

Have a good week end.

[sarahsch]

Hi,I used to suffer terribly with sun sensitivity & had to wear UV clothing in summer. I bought some waterfall cardigans from Australia (online). They were pricey, but I could then wear a normal top underneath & just wrap them around me when I ventured out.

Then I discovered rash vests which are UV 50 & bought a few from here to wear on their own or under normal shirts/T-shirts;

landsend.co.uk/Women/Swimwe...

Take care,

Sarah x

[Haired in reply to sarahsch]

Hi, thank you very much for the link look interesting and Discount at the moment. As you have bought some could you tell me when you wear long sleeved t vest do they feel tight/ clingy?( I looked at material content some elastase ) .

Thank you so much for your help. This would be great help when walking or in the garden as for some reason at the moment when I go out even when covered spots and rash appearing.

Have a good week end.

[sarahsch in reply to Haired]

The rash vests are tight & very stretchy so I found them comfortable. I bought white & navy. I have worn short sleeved t-shirts over them which gives a two tone effect. I haven't worn another long sleeve t-shirt over them, but I have worn a shirt over which was comfortable. I also bought a patterned rash vest at the end of season sale.Sarah

[Haired in reply to sarahsch]

Hi Sarah, thank you so much for all the information.

Regards, Marian

[Tash29]

hi, I have Lupus SLE & sjorgens, have you tried ladival f50 ( sunblock ) the sun cream covers different layers of your skin so my rash doesn’t tend to come out ( and I normally get the rash really bad ) if I have applied the cream? It’s a little more expensive but I would highly recommend, still cover up as I do but definitely worth a go.

I have tried so many different suncreams and this seems to be the only one that works. It is on Amazon and you can buy it from Boots.

Good Luck! You will have to let me know if you decide to buy it and give it a go how you get on. X

[Haired in reply to Tash29]

Hi Tash,

Thank you for your reply have not heard of this Sun cream but will try it. I am currently using Heliocare ( Dermatologist recommended this one plus Helliocare Ultra D capsules buy on line).

Enjoy the Bank Holiday.

X

[StockCarRed]

Hello Haired, regarding your rash did you discontinue with the PPIs? I was diagnosed with Subacute Cutaneous Lupus Erythematosus last year after a 2 year battle with rashes, using various creams prescribed by my GP which never cleared the rashes. I had started on omeprazole 3 months before the rash started but was not made aware of the issue with PPIs, I eventually saw a dermatologist in August 2022 who prescribed new creams but by now I myself had found information about PPIs, I queried this information with both my GP and dermatologist but it was basically dismissed, but I decided to wean myself off omeprazole and was prescribed a different drug for my stomach problems by a young GP who had joined the practice. I could only use the creams for a month (they were strong) but i was advised I could use them to maintain rash if it flared again. I was also told i may need medication but thankfully I didn't need any to clear the rashes, I have been rash free since last September. I am now very conscious of the sun, I use F50 suncream, cover up and avoid being out when the sun is strong as much as possible. I am waiting for a Rheumatologist appointment for possible Sjogrens and Vasculitis? I do hope you have the rash under control and you are feeling better? Take care, Best Wishes.

[Haired in reply to StockCarRed]

Hi, thank you for your reply your story sounds so like mine. I only took PPI fora week as Rash had appeared. Like creams did not work at all. I eventually got to see Dermatologist who referred me to a Rheumatologist. They both did biopsies which confirmed Lupus and Sjogrens. My GP said he had never had a patient with an allergic reaction to PPI before. That was back in 2017 we have since discovered I am very intolerant to medication. Although Rituximab helped clear up the terrible sores on my skin I do have to be very careful. Dermatologist recommended Helliocare Sun cream For face ( use every day) and their Sun block plus Helliocare Ultra D for photo sensitivity.

Even with all that the past few days although no sun shining I have had to be very careful as the rash has started again . It really is trial and error . I have ordered a UV long sleeved TShirt anything to help protect the skin. Yes the creams have to be used very sparingly as they thin skin. I hope you get your rheumatologist appointment soon. Take care and thank you for your reply. X

[StockCarRed]

Hi, thank you for your prompt reply, I will look at the suncream you use, at the moment I am using Uvistat which I get on prescription from my GP, so far so good, but good to have options, hope you like your UV TShirt and it helps to protect your skin, every day is a trial. Thank you again and Very Best Wishes.

[Haired in reply to StockCarRed]

Hi, great if you can get Uvistat on prescription. Don’t think it’s on prescription here in Ireland must enquire. Enjoy your Bank Holiday. X

[StockCarRed in reply to Haired]

Thank you. Hope you don't mind me asking, where are you in Ireland? I am originally from Kildare! Hope your rash is receding, fingers crossed, Take care X

[Haired in reply to StockCarRed]

hi, I am from just outside Dublin in Co Meath a place called Ashbourne. Have you ever met up face to face with someone who has Lupus and Sjogrens? It would be so good to meet and chat to someone/a group who understand what it’s like to have these conditions. Rash clearing a bit but it usually takes time so not stressing about it.

Take care Marian x

[posthinking01]

Hi there I too have a problem with the sun - I have bought UV clothing from Solbari (UK) although they are overseas they have a UK agent. I have also bought gloves as my hands burn through the windscreen when driving and also a large cape which is made of swimsuit material which I can throw around my chest because this is where I am weak and can get a chest infection if I overheat in that area. Whatever you buy make sure it is loose - not tight fitting - also can I recommend to everyone a wonderful sun cream that has been brought to market by a Skin cancer specialist and not only is it good but also very inexpensive. I have problems with sun cream it normally makes me itch but this is wonderful and.......you don't use much it goes a long way and when it soaks in you can wear makeup and it doesn't affect the 'look' - the cream is called Altruist - they have a website. Hope this helps.