Do I need to see my doctor if I have Vasculitis?

[Chancery]

Hi, I had a run of illnesses all clustered together: I severely injured my back, got cystitis on the same day and then, in the course of trying to treat that took Codeine which brought on an attack of Sphincter of Oddi. These are severely painful and I needed a Buscopan injection from an OOH surgery. Possibly because of the severe back pain and having to sleep sitting up on the sofa (I'm still on it, although lying down, 4 weeks later!) I couldn't heal the cystitis and it took 3 courses of antibiotics to do it, but even now, I still have a 'twitchy' bladder and irritation, so it doesn't feel quite right. On top of this I have some kind of eye infection/rash which won't clear up either.

The end result of this cluster-f*** of complaints was I was taking a very limited dose (no more than twice a day) of OTC Ibuprofen for a few days, which doesn't agree with me (my body doesn't like NSAIDS), and I was infrequently using Voltarol gel which I had been assured by the out of hours doc "wouldn't upset my tummy"). I foolishly used the Voltarol gel on my Achilles Tendonitis and bingo! day later I have a return (I hadn't had it in 4 years) of my Urticaria on my ankles. Only something was wrong with it - it just kept getting worse and worse and spreading up my legs. I got an urgent doctor's appt' because I thought this has to be a drug reaction. She drew on me so I could monitor its creep and sent me off with steroids. This is my first day of taking them and it does seem to have worked, in that it's dropped the severe itching and the swollen water-retention pain, however, what I thought was urticaria has now gone purple and I have two large purple patches on my legs, which Dr Google's images suggest is a purpura rash and most probably, by looking at it, Vasculitis.

I still think this is probably a drug reaction. But I assume it is autoimmune in nature and I've never had vasculitis before. I don't know whether I should relax, as the steroids will take care of it and it's probably just a one-of thing, or whether I should see a doc to have the diagnosis confirmed, in case the rash does go away but I was the only person who saw it and therefore 'knows' it was vasculitis.

I apologise for the long-winded story, but I needed to give some context so you know this didn't come out of the blue. If it is drug related, am I safe to assume the steroids will fix it and that I can leave my body to heal it, or do I need to consult with someone in case my (5 day, 8 tablets a day) regime of Prednisolone is not appropriate? Any advice most gratefully received. I HATE going to the docs and I seem to have moved in there recently, but if I do need to go for my long-term health I'd rather bite the bullet. Many thanks!

P.S. Will this damage clear up as it heals or will I be left with scars, because it looks horrendous?!

[Hidden]

Hi Chancery. My advice would be to photograph the rashes and date them; keep a diary of events/changes etc; write in your notebook diary all questions you have and go back to the doctor. Steroids are used for vasculitis but not usually short term and if they are, then they're often replaced by another treatment. That treatment would depend on the type of vasculitis you have, if it's decided that's what it is. There is not a blood test diagnostic of vasculitis and the picture has to be taken as a whole history but I would want bloods done and one of those to be ANCA. Again, if ANCA is negative it doesn't mean you haven't got vasculitis which is why this condition is confusing. If it is decided you have a type of vasculitis, and there are about 18 types, you need a consultant who specialises in vasculitis. I would also ask for urine testing. There is a lot of information on the vasculitis uk website, including a helpline for 1:1 conversations to support you. Hope things move forward for you.

[Chancery in reply to Hidden]

Thank you very much, Maria, I appreciate the help. It is now day 3 of the steroids and some of the purple discolouration has dropped back down to dark red and individual spots are appearing again instead of one large blotch, so it does seem to be reversing things. I'm going to do the full 5 day course and see how it goes then. I'm assuming that if this isn't just a drug-damage attack of vasculitis then as soon as I stop the steroids things will likely get worse again, so I'm going to work on the Occam's Razor theory that the simplest explanation is likely the right one and it is just a severe reaction due to drug hypersensitivity.

Could I ask you two more questions?

1. Will the 'staining' die away in time or are the 'scars' likely to remain permanently, or for a long time (I ask because my chronic urticaria left me with two 50p piece sized 'scars' on both legs from many years of attacks).

2. I take it that if this is vasculitis proper, as it were, rather than just a severe reaction, that the condition is for life and it will come back at some point - or worse, never leave me?!

Many thanks, Chancery

[Hidden in reply to Chancery]

Hi again. I'm not a doctor and can only say how I've been affected, however, to answer your questions in relation to my experience, the staining fades but hasn't gone and if I'm having a busy/tired day, it becomes more red; if the vasculitis proper, my understanding and current treatment is to get the vasculitis into remission, maintain that and then aim to get off the medication used. From what I've read on the Facebook page, this timescale varies hugely per person. As for returning, this also seems to vary per person.

[Chancery in reply to Hidden]

Thanks, Maria, I appreciate that. Fingers crossed this one will be a one-of thing! X