SLE flare up

[COCO66lola]

Hello all just needing some advice.

I have had Sjogrens and lupus for over 20years with mid to mild symptoms, but on 6/7th January had swollen knees with a rash that lasted a few days. Then the rash spread to lower legs, ankles/ feet became swollen, pins and needles feeling very tight skin, struggling to walk, admitted into hospital for a few days so could have stronger medication! Was prescribed steroid treatment 30mg per day until seen by rheumatologist.

Been told it could take up to three months to improve!

Has anyone else had anything similar?

Any advice would be appreciated.

[StriatedCaracara]

Are you on hydroxychloroquine?

If not may be worth pushing to see a consultant sooner.

Linking to another post with videos. Steroid fixes, but has side effects, so is usually minimalised - hydroxychloroquine reduces amount of steroid needed.

healthunlocked.com/lupusuk/...

[COCO66lola in reply to StriatedCaracara]

Hello StriatedCaracara

Thank you for your reply.

I am using Hydroxychloroquine, 2 tablets once a day.

My concern now is the sores that have developed over both ankles which are very painful, have been using Oromorph oral solution 5mls ,Naproxen and paracetamol.

Any other ideas?

[Brackensmum]

Hi, I was diagnosed 12 years ago and other than it affecting my liver on a couple of occasions, like you I have had mild to middling symptoms which were reasonably manageable. However about 2 weeks before Christmas I got crippling joint ache along with awful pins and needles and numbness in my hands and feet and was put on 30 mg a day of Prednisolone. It certainly took the pain away (at least during the day time) but they won't keep you on it for long so put me on hydroxychloroquine at the same time. Hydroxy has always worked well for me in the past but sadly it takes between 6 and 12 weeks to work so I'm still in a lot of discomfort, but mainly during the night. Hang on in there, I do hope it improves soon x

[COCO66lola]

Hello Brackensmum

I tend to agree with you the pain is so much worse at night. My other problem is the open wounds on my ankles.

Hydroxychloroquine is my main medication and I’m still seeing my rheumatologist at least twice a year.

Thank you for your reply at least I don’t feel as though I’m alone and the only one suffering.

It’s nice to know others are experiencing similar problems.

Look after yourself x