Hi, I new to this sort of thing and normally I just plod on with my symptoms I in the hope they will ease a case of pretending I’m not ill. I was diagnosed with lupus SLE 7years ago and saw a rheumatologist at least once a year. Last year I developed a rash which covers the whole of my body but in the past 3 months the rash has blistere, sores have formed all over my body. My skin feels like I’ve scolded it, it’s so sensitive to touch. It will be bad like this for a couple of days ease a bit as if in remission then come back worse than before. The doctors have given me antibiotics and increased my steroids but no improvement tried various creams and ointments still with no improvement. Does anyone have any advice on what I can do to help.
I do have an appointment with the rheumatologist on the 28th of this month and I’m still waiting to hear from the dermatologist
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Chocolab
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Oh that’s awful! I had a horrible rash too started on my face from sun, (Mylar) then arms the legs, feet! I went to two
Dermatologist and one did a biopsy to make sure it wasn’t from my hydroxychloriquin. Prednisone did work but it took time. Good luck, I hope you get answers and relief!
I get that regular its a nightmare just going through it the now was terrible going through it during lockdown.
Dermatology was closed down so couldn't see my consultant had to phone doctors as they were phone consultations only, she doubled dose of hydroxychloroquine which has helped rawness but it is still there under skin looks weird as now are mottled, have two consutants trying to work out what to try next as tried so many treatments none really effective. Look up subcutaneous lupus sounds like you are suffering rash it brings on when really bad I usually have to go to dressings clinic as i live alone and cant reach to apply creams on back usually dermovate then hydromol to ease dryness i have to wear silk undergarments like long johns and long sleeves tee shirt to help form barrier to stop rubbing from clothing bed linen etc.
It's bad time of year for it as i am photosensitive have to be really careful sunblock, uv protective clothing, hats and sunglasses etc. Hope you get your skin under control as really gets you down.
Thank you and I’ll look that up, I feel pretty low with it today, I’m taking ibuprofen and paracetamol to ease the pain doctor going to try another cream see if that helps and getting my bloods done as they haven’t been done since lockdown. I recently bought uvclothing hats masks and tops so I’m really hoping it helps plus I now just wear 100% cotton or linen clothing which feels soft to my skin everything else just feels jaggy. Thank you
I'm really sorry to hear that you have them blisters all over I only get them on my hands and I can not stand them they are the most soar and irritating things I have ever had my heart goes out to you
I have had Skin Lupus for about 3 yrs. First time medication and steroid cream cleared it but came back much worse about 6 months later.suffered with terrible burning inside my legs and itchy especially at night. They tried lots of medications and creams but nothing worked it got worse.
Last year the skin got very lumpy and broken and was leaving very bad scarring especially on my arms and back.
Dermatologist took me to a group of 5 other Dermatologist and they decided I should take Methotexrate. This cleared up the skin, stoped burning and even the scarring cleared up. BUT I now have every side effect you could have with the medication. Have to give it up as I am unwell for 5 days in the week and getting weaker all the time. Would risk rash again.
Saw my rheumatologist least week and he is recommending a different medication.
The rheumatologist changed my meds about 5years ago to include methotrexate but it messed up my bloods, I was on it one week then off it for 2 weeks in the end they took me off it as I wasn’t really on anything for my lupus. They tried sulfazadine in December but I took a severe reaction to it that I never want to live through again. I’m on hydroxychloroquine and 5mg of Prednisolone everyday for the past 5years they want to take me off the prednisolone and try something else which I’m cautious about after the last time.
Spoke to dermatology this morning I’m still a bit on the list to be seen but when I see the rheumatologist next Friday if they contact the dermatologist hopefully they can work something out in the meantime to help.
Sorry to hear that you're suffering this way...skin is everywhere n when it's doing this kinda thing it's so hard to think straight do I'll try n keep this brief.
I have subacute cutaneous lupus ( SCLE) which is all to do with skin..I feel your pain!! I was diagnosed in 2017 n have been struggling to get some kinda control ever since..I've tried lots of meds so I have some experience.
U say about the steroids n having sle..r u on any other meds? It would be helpful to know what creams your using too.
Dermol 500 lotion is what I use to wash with..avoid all fragrances in soap etc..chemicals r definitely a no-no!! With the dermol I can wash in it n then use as moisturiser afterwards n applied to itchy skin it helps to soothe..I get it on prescription but u can buy it too.
I use steroid ointments n tape on my skin..depending on where skins cracked n sore!!
A site called dermnetz was recommended here from a fellow member..sorry can't post the link but if u Google u can have a look at many types of skin rash..I found this site excellent in identifying my rash n seeking the appropriate treatment n I'm pleased to say that things have improved (for now)
Im on loads of internal meds too but won't bore u with the list!!
If u can record all of your symptoms in a diary n take pics of your rashes.. problematic areas..it will give dermy a good idea where rash is..I find it helps at appts if I don't have to undress coz it blooming hurts when skins raging!!
They have me on eumavate and Eurex they also given me antibiotics and increased my steroids to 30mg per day none of it helped. We have tried a few different things too and the one at the moment is a gel you put on your kids if they have chicken pox.
For the past 8 weeks I’ve not used any shower gel or moisturiser in fear of triggering it . As we don’t really know what it is yet so keeping chemicals away from skin. I bought uv clothing from solberi and they have a moisturiser for the face which is for sensitive itchy rash it feel good on my skin plus it’s cool.
I take cool packs to bed to keep me cool as well as having a fan on all night. Changed my bedding to cotton to keep it cool and so far nothing is helping.
Yesterday was an ok day but today is not it’s pretty painful I’m taking pics everyday so that I have evidence to show them also trying to organise a biopsy with doctor so that can be done before I’m seen not sure if that’s the right way to do it but going to try. The fact the blisters are on my face, neck in my nose which is really painful as they all burst and are now sores and bleed. They have also appeared round my eyes chest and back. I’m on paracetamol and ibuprofen for the pain which gives some relief and now I’m back to 5mg of steroid my joints are now aching.
I'm taking a mixture of meds which is working for me currently..things aren't perfect but better than they were. I'm on hydroxy 300mgs per day, methotrexate 15mgs per week, prednisolone 7mgs per day n I'm reducing this very slowly..by 1mg per month at the moment. I'm on other meds too but these r the relevant ones. I'm wondering if u have reduced steroids too quickly..this is proving to be tricky for me too...it's the same with hydroxy I've managed to reduce from 400 to 300mgs per day but anything lower than that I flare!! With pred I tend to flare when I go lower than 10mgs which is why I have to do it really slowly. Thankfully I've been able to reduce to 7mgs(since yesterday) with the help of methotrexate which I started just before Xmas.
Do u cover up in the sun? UV sensitivity is common amongst us n I have photosensitivity with UV and flourescent lights..so even indoor lighting has to be warm white bulbs!!
U say that you're using paracetamol n ibuprofen which r helping but u could ask for some stronger pain relief to use while your suffering like this!! I'm thinking of cocodamol maybe..I'm prescribed tramadol which I use in emergencies..but be aware that these drugs can cause dependency if taken too often!!
I have to use steroid ointments rather than cream coz the cream doesn't last n I often have to cover large areas of my body. I have betnovate ointment that I will use for a few days then if skin doesn't improve I use Dermovate ointment which is stronger. I've never used Eumovate so sorry no experience there!!
Another thing I'll mention is if your skin is itchy n inflamed I do take piriton coz it helps to calm the itch!!
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