SLE flare up

[COCO66lola]

Hello everyone I’m after some advice please.

At the moment I’m having an SLE flare up that is affecting my lower legs , I have got open wounds on both ankles they are looking like ulcers, I’m also struggling to walk and keep getting infections and have very bad pins and needles

I'm currently on Steroids 4x5mg per day, hydroxychloroquine 2 tablets once a day, vitamin D and Omeprazole 2 tablets once a day.

My question is my rheumatologist wants me to start taking Mycophenolate to help with the flare up but the tissue viability nurse is concerned that it may halt the healing of the sores.

Looking forward to your replies, kind regards 😊

[Spanielmadlady]

Hi Coco. I can only give you my experiences. I take mmf and pred. A graze on my ankle a couple of years ago ulcerated and it took 3 weeks of inadine dressings and antibiotics to heal it up. I'm due ligament reconstruction surgery on my ankle and my Consultant wants my mmf stopped 4 weeks before and for 2 weeks after .i also need my steroids as low as possible which isn't easy when I'm steroid dependent. When I first went on mmf every break in the skin even paper cuts went septic ...I was covered in plasters. Do you think you can get your sores healed up abit more before going onto mmf ? Kind regards SML x

[COCO66lola in reply to Spanielmadlady]

Thank you for reply, I have had these open wounds since 24/01/24 and they keep getting infected. I will have to discuss this with the rheumatology nurse before agreeing any treatment.

[Spanielmadlady in reply to COCO66lola]

Oh no i really feel for you.Steroids affect healing too. Inadine was the only thing that healed mine up.x

[posthinking01]

Hi are you able to take any vitamin or mineral supplements as often low zinc is implicated in leg ulcers - also have you had your thyroid checked ? You would need to check with your medical team before taking anything though !