Painful livedoid vasculitis

[Sunphoenix]

I’ve just been discharged from 5weeks in hospital with painful livedoid vasculitis in my feet and lower legs. I couldn’t walk. Took 2 weeks to relieve the neuropathic pain. It was the worse pain ever! I’m was on azathioprine but now on prednisolone 45mg and Mycophenolate mofetil(Cellcept). Has anyone experienced this? Seeing rheumatologist soon to increase mycophenolate mofetil and hopefully reduce steroids as my face is like a moon now. Would appreciate any advice on any experiences, future management or coping with terrible pain. Thanks.

[NeuronerdDoaty]

I just hope you get better every day. I’m sorry you went through all that pain. Take care of yourself!

[Sunphoenix in reply to NeuronerdDoaty]

I will. Thank you.

[Anira]

I was on the same dose of Prednisolone when I was diagnosed with Lupus Nephritis 10 years ago. And I had the same problem with “moon” face and weight gain. The doze of Prednisone will be gradually reduced and you will noticed all of this side effects disappeared. You just need to be patient and live through this difficult time.

[Sunphoenix in reply to Anira]

Thank you

[Lupiknits]

I very much hope you get better soon. I have no experience of this, but it sounds awful x

[Sunphoenix in reply to Lupiknits]

It is horrible. I’d wish it on no one.

[Cathsmart]

Unfortunately the Mcyophenalate does take a few months to work but when it does it does decrease the pain. I was on 60mg of Prednisone and 2 gram of Mycophenolate a day. Very scary being on Mycophenolate with increased risk of developing lymphoma and skin cancer so wasn't ideal but you try anything when you live with horrible pain.

I was tried on all sorts for pain of lower legs but Tramadol was the only thing that helped. My Rheumatologist then prescribed medicinal cannabis drops which were a game changer (I live in New Zealand). On these drops I had very little pain and could sleep again. They don't get you 'high' so you can function as normal.

In May this year the doctors discovered that I didn't have autoimmune and everything I went through for 2 years was actually due to a problem in my spinal cord.

I wish you the best and really feel for what you are going through.

Take care

Cath

[Sunphoenix in reply to Cathsmart]

Yes I’m on Mycophenolate 1000 mg a day now, starting on 2000 mg daily from Friday when I see the rheumatologist. I started about 5 weeks ago. I hope when the steroids are reduced soon but hope pain doesn’t come back when the decrease starts. I’m in England, uk.

[Cathsmart in reply to Sunphoenix]

You poor thing. When my steroids were reduced to 20mg I stayed on that dose for a year and a half and it worked really well. Hopefully you will find a dose that works for you

[sircharles41 in reply to Cathsmart]

What causes spinal cord problem thanks

[Cathsmart in reply to sircharles41]

Hi sircharles41

I have a condition called Scheuermann's disease but mine is alot lower in my back. Ive had it since I was 13 years old but up to a couple of years ago it hadn't caused any problems. I went back to my doctor with the feeling of burning hot feet, severe right hip and calf pain. Hopefully I will have an operation late this year. Fingers crossed!

[sircharles41 in reply to Cathsmart]

Wish you well I was offered same thing but I chose therapy physical therapy and oils that relieve pain look into this