Wegeners diagnosis (pre biopsy) not sure how to feel

[petitpoule]

Just that really. Was called in yesterday to the GP as my bloods came back with 'highly probable' pointers towards wegeners. More bloods were taken to test my kidney function and I will be booked in for a biopsy although in all the confusion I didn't ask for a timeline on this.

I've been prescribed Prednisolone in the meantime and I just wanted to speak to anyone who has 'been there'

I feel relieved and grateful I went to see a specialist and they requested I have this blood test. Hopeful that my symptoms I've been dealing with for nearly a year will maybe be get under control but also a bit worried I'm not upset.

Sorry we are all on this board but glad there is somewhere to be as I think I'll be spending some time here

Hi Petit,I've only just seen this post.
My DP was diagnosed 5 years ago,it was a very rough time for a few weeks but he's now doing well and finally back at work.
How are you doing?

Sorry Sarah I didn't see your reply, I'd given up on any replies to be honest! So happy to hear your DH is doing well. It's been quite a scary time but my kidney function etc is all good. My symptoms are mainly concentrated in my sinuses and my nose has become quite damaged but I'm still managing work so far and I have two young kids so life is matching along as semi normal but with lots of appts to squeeze in.

Steroids are interesting but not been too bad on them despite the high doses. A bit worried about the next treatment phase of immune suppressants etc but I'll find out more about that next week from the specialist.

I'm not googling anymore that's for sure! Could easily fall down a black hole.

Thanks again for asking how I'm doing, really means a lot

Hi.It's quite interesting how different it affects people.
Just to reassure you my DP has been immune suppressed since he was diagnosed and although he often feels like he is picking up something he has avoided sick bugs from the children and other infectious stuff. I'm not sure how tho!
His steroid dose is pretty low and I think he does really well. He did stop work for a while,he was extremely ill by the time they finally diagnosed him.
Best wishes to you.

Sorry you're going through this...it's a bit of a minefield and many Drs have little or no knowledge of this disease .
I have another form of vasculitis and been on high dose steroids and methotrexate for the past 18 months and I've found the Facebook page of vasculitis U.K. to be invaluable....if you're not on Facebook you can contact the help line for advice and support..
www.vasculitis.org.uk
Wishing you all the best