Chilblain lupus and potential ulcerated blisters

[pattypatchwork]

Hi, I am in the middle of a chilblain lupus flare up and a couple of them appear to be infected. I have been to see my gp today ( at the rheumatology helpline's suggestion) and I have been prescribed antibiotics. The doctor is concerned because the main blister that looks infected doesn't hurt when it's touched and he thinks it is becoming ulcerated . Does anyone know what I need to look out for in regards to this? He just said that if I start to loose feeling in my fingers that I am to go straight to a and e

[Barnclown]

interesting question! Glad your GP is stepping up with understanding & antibiotics, I totally agree about going to A&E if you loose feeling in your fingers, & same goes for if they persistently change colour

Just a suggestion: several years ago when my consultants figured out I have both SLE & Chilblain Lupus Erythematosus, I posted similar questions here re my finger lesions & ulceration etc … i also posted these questions on the HU Scleroderma & Raynaud’s U.K. community forum And I got good advice on both forums.

Looking forward to following your discussion.

💞💞💞💞 Coco

[ijeasike]

I have got raynauds on all my finger. It started with chillblains and started ulcerating too. My doctors gave me antibiotics when it got infected. My rhumatologist place me on Iloprost infusion. It was a very painful treatment, it didn't really work so I was prescribed sildenifil 50mg twice a day. Then they did a placma exchange and so ritoximab infusion.

Unfortunately none of these helped but when I moved to Manchester, my consultant prescribed Flolan infusion 3 times a year (5 days a week 8am-4pm). On one occasion my fingers where really bad that I had the infusion for two week. That really helped put every thing under control. I still have the infusion twice a year now.

Advice: keep those fingers warm, if possible wear gloves to bed. When it is kept warm it aids circulation. I hope this helps xx

[Krazykat26]

Hi patty 🤗Yes I have digital ulcers..mine tend to be on the palm side of my hand and they're quite tricky to manage and mine are very painful. I've got three fingers affected at the moment.Did your doc take a swab from your ulcer at all? As I understand it the results would indicate if its infected and which antibiotics to prescribe. Having said that mine have never become infected but thats coz I'm on them as soon as they start appearing.

I seem to remember you saying that you used protopic ointment and that Dermovate ointment doesn't help you so I'll give you my treatment and hopefully it will be easy to adapt.

I know when one is coming coz I get redness, pain and heat in that finger. I use Dermol lotion anyway so I apply that to try and reduce the inflammation. When the ulcer comes to the surface I apply small amount of Dermovate ointment and leave the finger uncovered. If/when the ulcer breaks open I dress it. I clean it with saline (Irripod I get it on prescription) dry with sterile 4 ply gauze. I use a small piece of lubricated gauze (Atruaman) that I cut to the size of the cushioned bit on a plaster (Elastoplast fabric plasters are the best..I can cut it to size).

I then put a small amount of Dermovate ointment on the gauze and place that over the ulcer making sure that it's covered with the ointment. Get the plaster and wrap around so that the gauze and the cushioned bit of the plaster are aligned. Then you can wrap the plaster round your finger. This takes some practise so it is bit trial and error but you'll get the hang of it. I leave the dressing on for two days and then assess and redress if I need to.

Another treatment that's helpful for me is the vinyl glove method I was told by my last dermatologist..I call this my intensive care treatment. I cut off the fingers of a vinyl glove leaving the finger I want to treat..so just leave the index finger intact and cut the others to about half way down. Clean as before and apply the Dermovate onto the ulcer and put the glove on and keep it in overnight. This gives the ointment more chance of staying on the finger rather than getting rubbed off on clothing or bedding.

Funnily enough I've got a plaster on the same finger as I type so please know that you're not alone 💜🌈xx

[Krazykat26 in reply to Krazykat26]

Thought I'd add a pic

Digital ulcer

[pattypatchwork in reply to Krazykat26]

Ouch, they look sore.Mine are caused by my immune system attacking my skin. I have had a steroid injection today so hopefully the itching and blisters will go away

[Krazykat26 in reply to pattypatchwork]

Yes same here. I'm diagnosed with Subacute Cutaneous Lupus. Hope the steroid injection works it's magic soon. I take piriton to ease the itch 💜🌈xx

[pattypatchwork in reply to Krazykat26]

I've had time to read what you had written and you've given me some ideas, thank you x