Newly diagnosed confused! First symptoms?

[xxbluebooxx]

Hi I'm new to this. I have just been diagnosed with vasculitis from a skin biopsy after suffering from a very painful rash on my legs and more recently my arms for 8months.

It started when I was 7 months pregnant and I was originally diagnosed by dermys with erythema nodosum and told rash would disappear after delivery of my baby and I was left untreated. It didn't go away it got worse and changed in appearance hence the skin biopsy.

The truck load of tests have now began to find which type of vasculitis I have. I have been commenced on steroids (pred) which has dampened down the rash but the last day or so it seems to b creeping back has anyone experienced this?

I have no other symptoms other than this awful rash. Who Would have thought it would make me feel so down. Just wondering if anybody else's vasculitis began with a rash and what type they eventually diagnosed with? As I'm hoping I have no other organ involvement! (Of course)

It's nice to find this site as at the moment I feel very anxious and alone. This condition is so poorly understood.

Any replies would be appreciated. Thank you

[loobylou55]

Hi blueboo

Mine started with a rash before Christmas and has progressed to leg ulcers from the rash breaking down. I'm grateful that my internal organs are unaffected but have also had a skin biopsy. Having been transferred from a rheumatologist to a dermatologist she believes it is Henloch Schonhein Pupura and has now prescribed steroid ointment to work with the steroid tablets and elevate legs so heels are above ankles. I'm also to wear flight socks all day which do help reduce the itching.

I've found it very depressing watching my legs get more and more ugly (despite the low dose steroid tablets), having stomach pain and joint pain which I put down as me getting worked up but are apparently all symptoms. I was encouraged to be told even though it looks awful scarring is uncommon and the steroid cream should start to make a difference quickly. Hope you start to get the answers you need. Happy to chat

[xxbluebooxx]

Thank u so much for your reply,

My legs are so ugly and now my arms are going the same way. I am very self conscious about it. I hope it does not leave any permanent marks.

Sorry have you already had skin biopsy or waiting to have it? Is your rash just on your legs? Is it itchy? Mine isn't. (Sorry for all questions it's just nice to talk to somebody going through the same.

Yes I should have mentioned I did get terrible joint pain in knees and ankles before starting on steroids.

From reading peoples stories on here everything seems so daunting and feel so worried my other organs will be involved. Some people really have had a rough ride.

It's so hard trying to get my head around this condition and all the different types.

[KathyW in reply to xxbluebooxx]

Hi. Sorry to hear you have a diagnosis of Vasculitis but at least its better than not knowing. I have a diagnosis of Urticarial Vasculitis and have been on Preds and Azathioprine for 15 years, it sounds very like your description of your symptoms. Mine started with various rashes for most of my life which doctors always diagnosed as allergies and treated over the years with antihistamines. 25 years ago the joint pains started, again mis-diagnosed as early onset arthritis. These began in my legs but eventually spread and were characterised by always being in more than one joint at a time, usually down one side of my body. I then started having bad fevers that coincided with the pain and the rash but still the hospitals insisted it was allergies and arthritis - they had no idea what the fevers were! It wasn't until I moved home and registered with a new GP who referred me to Rheumatology in Christchurch who are very switched on to Vasculitis. Like you I had skin biopsies, lots of tests for several months and saw lots of specialists in different departments. Eventually they all agreed on Urticarial Vasculitis and the resulting treatment has more or less kept it under control.

I hope you get a quick diagnosis and that if it is Urticarial Vas that it doesn't progress to anything worse, it really is one of the "kinder" Vasculitides as it doesn't involve any major organs and can easily be managed - albeit in my case in the longer rather than the shorter term. Good luck

[xxbluebooxx]

Sorry I've just re read your reply and know yours is itchy and you have already had biopsy. Sorry was just excited to hear from someone ha ha. What investigations have you had if you don't mind me asking?

[Sjogy]

Hi

I was diagnosed with leucocytoclastic vasculitis which first appeared on my lower legs. My rash was non itchy. I had some aching and swelling along with it. I also. Have Sjögren's syndrome and have been told it is quite common to have vasculitis as part of this syndrome. I am in remission at the moment and have no scarring I do have some numbness in a couple of my toes. I was treated with prednisolone and methotrexate. I am presently on a maintenance dosage of methotrexate 10 mg once a week. I have no other organ involvement. I hope things settle down for you very soon.

[xxbluebooxx]

Hi Sjogy,

Thank you for your reassuring reply. Glad you are now in remission. Seeing my consultant this afternoon so hoping I will have more of an idea what's happening and get a plan in place fingers crossed

[cedric]

mine started with a rash I was sent for blood tests that's how vasulius was found but they will do more tests to find out wich one

[loobylou55]

Hi blueboo

My rash wasn't itchy at first but the prescribing nurse at our GP surgery gave me antibiotics and it really seemed to flare from then and is itchy from time to time now. A few of the sites have just gone away but others have turned into ulcers. I've been using the dermovate steroid ointment since Monday and they don't look as angry now (unless it's my imagination); the compression socks do seem to help with the itching a bit. Whilst it's hard to believe they won't scar I've been comparing photos (great advice I had on here to track the rash!) and where they haven't burst but just faded there is barely a mark so don't despair

Hope this afternoon went well

[xxbluebooxx]

Hi thank you for your replies.

Well this afternoon my dermy consultant told me they believe I have PAN. Still unsure if there is any other organ involvement so I have got to have a full body CT scan and more bloods.

Got to stay on high dose steroids for time being until all results are back. I am also being transferred to a rheumatology consultant.

[02061949]

Hello, My daughter's vasculitis started with a rash on her legs. She had a biopsy of a nerve in the calf of her leg. It came back as Systemic Vasculitis. That was 4 years ago. She has difficulty with the nerve endings, head, hands, feet (up to her mid thigh area). We have only just found a specialist who deals with vasculitis so the search is still ongoing. My daughter is 35 and has been sick for 5 years. If you want to talk, write to me. I will answer you. I feel so much for my daughter and for you. This disease is scary isn't it?

[Wellsie]

Hi, as per my reply to the other PAN thread, it is a scary thought, but there are many, many people in this community with all sorts of experiences of all sorts of vasculitides. You will find many people here inspiring, and it's a really friendly group, with people happy to share advise and experiences. We all know how lonely and desperate the early days post diagnosis can feel...

[janjon]

Hi

My son started with a rash - all over his body- and the GP didn't know what it was. My son has had urticaria and other allergic reactions for most of his life. He was referred to Dermatology again. However, he also had blood and protein in his urine. Dermatologist thought it was Vasculitis. After biopsies, blood tests and Xrays , he was diagnosed with Leucocytoclastic Vasculitis and referred to a Renal consultant, where they found he had IgA Nephropathy,- kidney disease linked to the vasculitis. He is on Hydroxychloroquine which has helped the rash. The streroid creams made no difference, He was also on Prednisalone for a while, which also helped.He has regular visits to the Renal and Dermatology clinics, and his tests show he is stable. However, he had flu last year and ended up in hospital, with problems with his kidneys but is fine now. The rash has flare ups but he is well and his vasculitis doesn't cause him any problems unless he has a virus etc..