Discoid lupus ..

[RachelD1972]

Hi all, hope you’re all keeping okish. I’m about 6 months down my DLE path and have now been on hydroxychloroquine for approx 10 weeks. Initially I had one sore on the end of my nose and my Derm prescribed Dermovate for 3 weeks followed by protopic 2-3 times per week as a maintenance. My follow up app was due this month and has been pushed back to February, as has my rheumy app. My skin is driving me nuts. My initial sore did not hurt, itch etc but was red and looked similar to an ulcer. I now have patches which are sore, itchy and red & inflamed. It is just on my face. I am not sure if it’s eczema or the DLE. Dermatology do not respond to messages left. Is there anyone on here with DLE and how does yours manifest itself. I have a feeling this may be a reaction to something but what I don’t know. I use Roche posay products alongside my derm creams or good old diprobase. I have a feeling if I go back to my a GP she will bounce me back to trying to contact Dermatology who seem frankly useless. Any ideas from you lovely people in my phone? X

[Chanpreet_Walia LUPUS UK]

Hi RachelD1972,

I am sorry to hear that you feel let down by your dermatology team, are you able to ask your GP for a referral elsewhere?

Perhaps, if you do make an appointment with your GP you can ask him/her to contact the dermatology department directly to ask for advice during your appointment?

We published a booklet on lupus and the skin, if you haven’t already read it you can read it at lupusuk.org.uk/wp-content/u...

Here is the link to our blog article on ‘coping with oral and nasal ulcers’ which you may find helpful lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

[RachelD1972 in reply to Chanpreet_Walia]

Thanks for the info x

[A-r-c-h-I-e]

I have exactly the same problem my Derm Consultant said eczema I keep using the creams am &pm. Good luck The itching drives me crazy at night

[Cas70 in reply to A-r-c-h-I-e]

Hello - my local chemist gave me Flexitol hand balm and it really calms the heat and itching, my friend also recommended prescription only CALMURID. This has steroid in it. A spray of Deep Freeze (so long as no broken skin) calms my legs at night - they seem on fire. All good fun eh? So little is known about the many aspects of this illness - shameful. Good luck

[RachelD1972 in reply to Cas70]

Thanks, I’ll ask about it at the chemist. I’ve been putting my creams in the fridge which seems to ease it x

[A-r-c-h-I-e in reply to Cas70]

Thanks for info will buy flexitol today- fingers crossed it works

[Cas70]

Hi Rachel - I developed this after 18 months, have Discoid and Sjogrens- I stopped using Diprobase as it was making this worse -too heavy. Since using a Camomile cream from health shop my face has cleared. I only use Nivea products now and they seem to suit me. It is a form of eczema caused by our condition. My fingers crack and split. Have a good knowledgeable Consultant at last , after 2years - who will refer me on to Dermatologist after my bloods come back. With the NHS in crisis this has taken since early May. So much help and info on these pages. Good luck

[RachelD1972]

Thanks for replying. I use diprobase lotion which is not as thick as the cream. I have also found putting my creams in the fridge help as cooling. I’m being ultra careful as even stuff like aqueous cream stings at the moment. Hugely disappointed with dermatology but it has shown how spoilt I’ve been with my rheumatology team. But, equally realise how pushed they all are. Thanks for replying x