I have recently been seen by a rheumatologist, after suffering aches, swelling in ankles and a crop of spots on my legs and buttocks. All this started after having chronic sinusitis that started a year ago. I initially thought I was having a drug reaction as I had been on Clarithromycin for my sinuses.
Rheumatologist feels I have ANCA associated vasculitis and Proteinase 3. He initially said Churg Strauss, but is now unsure as something in my bloods didn't sit right so he was also mentioning Wegener's. He has now asked for a chest CT, as early this year I coughed up some small bloodclots and was treated for pneumonia. He has now ordered tests for GBM and anti C1q. I am lost in all this jargon and don't really understand what half of this means.
I will see him this Thursday for a follow up, when he says he will likely start me on 50mg of Mycophenolate Mofetil. He also wants me to see another ENT about my sinusitis and tinnitus. Since seeing him last week I have started to get spots similar to the ones earlier this year. I am usually pretty good with medical stuff, but I can't seem to take half of this in.
I am unclear if he is still trying to narrow down my diagnosis or if that is it? Has anyone else been given that as a diagnosis?
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lollypocket
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Hello there & welcome to this site. I can't answer your specific questions but please be reassured that ppl here have many similar problems and it will all sort itself out for you. Please do visit the Vasculitis UK website where there is a Routemap and all sorts of info there.
When you have more from your consultant, so how you get on and come back here. There will be other ppl answering your question I'm sure.
I found that everything seemed gobbledy gook initially. I then got copies of my tests and looked everything up on Google. I also keep a spread sheet on tests, how I feel and drugs taken, in fact I have become a real nerd. I slowly became more knowledgable as time went by. I must admit I wish I had known a bit more in the first place though, as I could have stood up against my rheumy!
Hello lollypocket.
Hardly surprising you're bamboozled by all that jargon, I am too. Sorry you had to join us, but I have found there is a lot of support from others in the same boat here and via Vasculitis UK (as Nadine has already said).
I have WG and my positive ANCA blood test was one of the things used to confirm my diagnosis.
Good luck with your appointments and if you don't understand something tell them so that they can explain, they might be assuming you know.
The guy I am seeing is giving me lots of stuff to look up, but I am struggling to take it in. I think the fact I am on the verge of moving house and have an autistic child who is convalescing from an op may have some bearing on that LOL
Hi lollypocket, if you go to the Vasculitis UK website there's a Helpline tab and on there you'll find the Helpline phone number. Give them a call - I did when I first found out my wife was diagnosed with Churg Strauss and the call to John Mills was the best thing I ever did as he's very knowledgeable and reassuring and he will take the time out to talk things through with you. He helped me a lot and pointed me in the direction of things to look for, questions to ask on next visit, etc and also told me about Addenbrookes Hospital in Cambridge which was the next best thing I did as I got her referred there and we've been going to the specialist unit there ever since (rather than the usual merry-go-round of visiting every 'ology in our local hospital) Good luck !
Welcome...I was diagnosed with non anaca associated vasculitis but as you rheumatologist said GPA(Wegeners) or EGPA(Churg Strauss) or maybe even both. Had a nose biopsy but it didn't help specify the type. My lugns were full of nodules.
It was hard for me to digest all the information about my new situation and it took time to accept.
My treatment started with 60mg prednisolone and 6 cyclophosphamide infusions. Now I am on 15mg if preds and take 150mg azathioprine(immunosuppressant).
The hardest for me and the best advice I can give is listen to your body!
The jargon is a bit of a nightmare to start with but hopefully you are finding the Vasculitis UK website helpful. All you really need to know about ANCA is that it is an antibody found in the blood which is associated with certain types of Vasculitis. The most common being:
GPA- Granulomatosis with Polyangiitis (Wegeners)
MPA - Microscopic Polyangiitis
EGPA -Eeosinophilic granulomatosis with polyangiitis (Churg-Strauss Syndrome)
The Proteinase 3 just describes the type of ANCA (there are two types) and this one (c-ANCA) is more commonly associated with Wegeners. Don't take that as a diagnosis because I'm not medically trained but some of your symptoms seem to be pointing to that. Churg Straus is also commonly associated with high levels of another antibody - Eeosinophils. Maybe this is what he was referring to when he said your bloods didn't sit right (ie no high levels of Eeosinophils).
I think you must mean 500mg of Mycophenolate Mofetil. I believe this is the standard tablet size. A lot of people with Vasculitis take this as a maintenance drug to keep their Vasculitis in remission (typically 2000mg per day). Usually you are started on a high does of Prednisolone (steroid) and stronger immune system bashing drugs to get your vasculitis in remission.
One thing that is essential is that you need to be treated by a medical practitioner who has expert knowledge of Vasculitis. Your rheumatologist may have this expertise, I don't know. There are certain leading hospitals in the country who have a Vasculitis team. I am certain if you contact John Mills he can give you a few names local to where you live. I am treated at the QE in Birmingham and I know Addenbrooks is another leading centre but there are a lot more.
Thank you Chris. Yes, I got the dosage wrong and it says 0.5mg per kg (50mg). I have managed to see a private rheumatologist as I am covered on hubby's health insurance. The one I am seeing specialises in Lupus, Vasculitis, Early inflamatory arthritis, Complex rheumatology, Gout, Soft tissue rheumatism and image guided interventions. He also works in the NHS and has asked my GP to refer me to him under that. I am in Kent, so not sure if there are any leading hospitals here.
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