Pan vasculitis

[Alexwwww]

Hi ... does anyone have pan vasculitis?? Whats your symptoms ?? How many years do u have it? Please help

[Fennahj7115]

I have had pan now for 17 yrs. I have also got churg Strauss. The symptoms are pain in my chest,arms and legs. The tiredness is overwhelming.

How long have you had it and what are your symptoms. I have been able to manage it with lots of support. My Rhumatologist has been wonderful. We are back to steroids I have had various doses over the years I am on 12.5 mg daily I am unable to get lower .

Unfortunately I have had breast cancer and it has gone into my bones. I am not sure if the pain I get is due to the cancer or the vasculitis. I do think what with the drugs and trying to keep a positive attitude you win through. I Will not let it take me over , it has helped to be in charge of the condition

Also make use of these support groups the members can help you.

Which area do you live in? . I am in Birmingham I will help if I can. However there are many people belonging to this group that knows a lot mor than I do .

I wish you well and try to keep your chin up, have you got any support.

Thinking of you

[Honey46311]

Hi, I have Polyarteritis nodosa (P.A.N) very rare and I had swelling at first and then painful nodules/lesions which flatten and darken after a few days/weeks. Along with peripheral neuropathy in the lower extremities. I began to develop drop foot. I'm 41... The pain was horrendous and mostly in lower legs prior to treatment . I'm still currently going through treatment now. My RA doctor prescribed high dose 80mg of Prednisone in October 2016. Once he prescribed the steroid my symptoms decreased and I could walk again. I was using a walker and cane for a month. I'm currently receiving Cytoxan infusions (7) and down to 10mg of Prednisone. It mostly affected my peripheral nervous system. My C-Reactive level and sedenmentary levels are coming down. Did they diagnose you with PAN?

[philtw]

I am 54 years, I had PAN when I was 21 years and went into complete remission after 5 years. In 2013 I was diagnosed with GPA. I relapsed again in 2016 and struggled to get it back under control. 7 months later I am now back under control, but I think it may have attacked my lungs again. I go for lung scan in June 2017 and bone density checks.

I'm currently on prednisolone, imuran, crestol, fosavance, Vit D and calicum. I've had rituximab x3 which helped to reduce my steriods.

Symptoms for both PAN and GPA were similar, but the only difference is that PAN affected my kidneys and GPA is affecting my lungs and respiratory system.

Main symptoms were joint pains in fingers and feet gradually affecting my knees and made it painful to get out of bed and down the stairs. I also had painful and weeping nodules on my elbows, loss of appetite and wight loss.