Blood test - is it vasculitis or not?

[Aussiebird87]

Hi, I am new, but not sure if I should be on here. 3 yrs ago my Neurologist found I have P-Anca, negative MPO. He then referred me to a Rheumotologist who was only interested whether I had Spondylitis or lupus. I was having my spine investigated at the time. I didn't have it so she discharged me. A year later I was ill, with muscle and joint pain, so GP referred me to another Rheumotologist who diagnosed polymyalgia rheumatica. I have been on steroids for 2 yrs. I now have different symptoms and not feeling well, so my Rheumatologist suspects Fibromyalgia. A few weeks ago I went back to my GP and we discussed the P-Anca, so she repeated the blood test and it came back the same result. She is unsure whether it is a vasculitis or Rheumatologist I should see. She told me to take the results to the Rheumatologist. I mentioned to my Rheumatologist 2 years ago about the P-Anca, but he wasn't interested either, just in my PMR. Now my question is, do I ignore it again or is there some other Consultant I should see? I am so confused, but will take the results to my Rheumatologist, but not confident he will react any differently then the first time. Thank you for reading this.

[PMRpro]

I've sent you a private message.

[Aussiebird87 in reply to PMRpro]

Thank you so much, you know your stuff. Will reply to you.

[croc099]

Hi from another Aussie. Try and see an immunologist. I came back a while ago with slightly positive C-ANCA PR3 while having blood work for something unrelated ( diabetes ). No treatment as I have no symptoms and they are very low. She did however take it very seriously and investigated everything thoroughly. Now on 6 monthly blood tests to check for any increase. So far it has stayed the same. You need to find someone who is vigilant.

Hope it works out for you,

Glenn

[Aussiebird87 in reply to croc099]

Hi fellow Aussie, I was born and lived half my life in Sydney, now live in England, but my heart will always be there. So an Immunologist might be able to help, will have to look up what they do. It is strange how they find things in blood tests, whilst looking for something else. I was having spinal problems, but my Neurologist was wise enough to request for blood tests out of the norm, after I told him what my mother and my older sister suffered from, both have similar illnesses. I hoped I wouldn't follow, but unfortunately have some of their problems already. So thank you for taking the time to write, much appreciated. Hope you are managing your health issues. Rosanda

[croc099 in reply to Aussiebird87]

C and P ANCA are auto immune type antibodies that frequently occur in systemic auto-immune diseases of which vasculitis is just one of them. Definitely worth a full immunological assessment by an immunologist. They may find nothing as was the case with me but still worth looking into especially since some immune system conditions are already being considered.

For the record, I started having mild neuropathic pain in the peripheral nerves of my feet. A classic diabetic complication. Since my diabetes has always been well managed and my blood glucose levels always good it was a bit of a surprise to my GP. The blood tests were ordered simply to look for any other possible causes. This is when these odd antibodies showed up. Vasculitis is also known to cause neuropathic nerve problems. Fortunately, this was ruled out but I still have regular screenings just in case these antibodies increase. Lucky for me they have been stable. The neuropathy was put down simply to the diabetes. With even tighter control of my blood sugar and more exercise the neuropathy has greatly improved to the point where it is only noticeable when I think about it.

Good luck and I hope you get to the bottom of this. Be vigilant and don't let the doctors fob you off.

Glenn

[Hidden]

Your blood results can be indicative of vasculitis and should be taken seriously, particularly as your symptoms are increasing. The problem with a rare condition is the number of doctors with limited knowledge so it's important to find one who has that knowledge. If you look on the vasculitis uk page, you'll find a helpline number and the people manning it have vasculitis and a wealth of knowledge. They will also help you find a specialist nearest to you so you can request to be referred to them. Good luck and I hope all turns out well for you. In the meantime can I suggest you keep a diary of events as it will come in handy at your appointment; photograph any rashes or visible changes too as it's easier than trying to recall later.

[Aussiebird87 in reply to Hidden]

Hi, thank you I will do just that. I don't seem to have any rashes, the one on my facem cheeks and nose, was told it looked like rosacea, at first thought to be Lupus. The only new thing I have noticed recently that is visible is varicose veins popping up on my left thigh, the thigh is numb. The right is less noticeable. I haven't had it checked out, as don't want to complain to the Dr yet about something else. Thank you for the information, much appreciated you took the time. Rosanda

[Suzym2u Moderator Vasculitis UK]

If you would like to contact the vuk helpline they will help in anyway they can vasculitis.org.uk/helpline