Stasis Dermatitis

[lou1972]

I have been a sufferer of Cutaneous Vasculitis since 2015. I currently have an episode which I have had since January this year but a consultant from Addenbrooks seems to think this is an episode of Stasis Dermatitis this time.l, only going by the pictures that were emailed. Does anyone else have experience of this after a skin Vasculitis flare up. I have not seen my actual consultant since February because of COVID and all my appointments have been done by telephone, but now into August and I am not getting any better and getting very depressed. I cant walk as very swollen feet and very red legs. Any replies would be appreciated

[Galaxy2]

Hi Lou

I've never been told I have stasis dermatitis but I don't know if my experiences resonate at all with you?

In the early days before I was properly diagnosed and pre predisolone treatment I had constant bruising on my lower legs, petichie and purpura bruising but also a hives type rash , the itching would be intense but as soon as I scratched my legs there would be instant bleeding under the skin as my blood vessels were so inflamed/fragile. My normally thin legs and feet would be at times so swollen, red and painful I couldn't wear shoes.

This rash would at times spread and my rib cage would be one of the most prevalent areas for it, I remember a doctor saying the inflammation on the outside was an indication of the inflammation on the inside.

I do now at times have hives type skin flares but not on my legs and have benovate cream to treat them.

Since I have had treatment the problems with my legs have resolved mostly , what treatment are you having for your vasculitis?

I do feel for you, January until now is a long time to be suffering like this and not being able to see your consultant is frustrating.

Jenny

[lou1972 in reply to Galaxy2]

Hi Jenny

Thank you for your reply. May I ask what treatment you have had and your specific diagnosis. I am currently on Colchicine and take Amitriptyline to help sleep at night. I was on Prednisolone for about 2 months but felt it wasn't helping apart from putting weight on everywhere. My consultant didn't want me on it long anyway. I am so frustrated that I am not moving forward. They want to do a biopsy but a much deeper one than before and have been told this would need to be done by a plastic surgeon as going deeper. I am panicking about this as one because of COVID and my sores are not healing anyway. They are taking forever. I am due a telephone appointment on Wednesday with dermatology so see what they say now. It was suggested to me that perhaps I should be under Rheumatology for my condition. What department are you under?

[Galaxy2 in reply to lou1972]

Hi Lou

I was initially diagnosed with curtaneous vasculitis once under rheumatology, it took along time to get under the right specialists and treatment. I was originally referred to haematology who diagnosed HSP but then this was changed, then dermatology, I spent about 2 mins in an appointment with a dermatologist and he said I should be referred to rheumatology.

My diagnosis has been changed over the years as my vasculitis is now thought to be secondary to sjogrens and SLE. I have been on predisolone and hydroxichloroquine for about 10 years, was on mycophenalote for several years too but now have rituximab. I used to have amitriptaline but just couldn't get on with it, it made me feel so odd.

I'm no expert but I would have thought asking to see a rheumatologist sounds like a very good idea. I know it is so difficult having unusual symptoms and not feeling like you are getting anywhere, the covid situation just adds to that at the moment too. I can totally understand why you don't want an invasive investigation at the moment, its all so unnerving.

Jenny

[lou1972 in reply to Galaxy2]

Thank you so much Jenny. I feel all alone sometimes with all this. My family are supportive but where this has gone on for so long I am very depressed with it all and wonder if there is light at the end of the tunnel. We have cancelled our camping trip because of this. There is no way I can sit on a beach. I cant stand the heat and my feet are so swollen.

I feel I have let the family down. I will have to give my all in the next telephone appointment and hope they will start to listen x

[Galaxy2 in reply to lou1972]

I can remember feeling like that, that I was getting no where for so long, I would put all my hope into my next appointment and then would get no further forward from it, then feel so low but hold on to hope, once I got to the right specialists and had treatment life has changed.

Please don't feel like you've let your family down, I'm sure they understand and can see what you're going through.

I do really hope something comes from your appointment

Take care x