Recently diagnosed

[annekat]

Welcome to the group, Hege... everyone has said all the right stuff, and your case and treatment do sound pretty typical so far. It's a weird and overwhelming diagnosis to get, and it's a blessing to have this forum here to walk you through it. I honestly don't know how I'd have coped without it. Knowing a whole crowd of people with the same thing makes all the difference in the world. And it is often easier to find information from here than from most doctors. Check out the search function for older posts about all aspects of this thing we have. Let us know how your treatments go, and keep in touch!

[jlove]

Hi Hege! I'm a little late to this party but I wanted to hop on the welcome train too. Receiving the GPA diagnosis can be jarring at first but, like others have said, you will find plenty of support here. I was diagnosed almost 4 years ago and now, with a good treatment plan established and regular check-ups with my rheumatologist, I feel like my GPA is less of a dominating force in my life. My symptoms are much more under control now thanks to Rituximab and I also think I've gotten used to the idea of having this extra thing to worry about.

Much like you described, I felt very isolated when I was first diagnosed. Coming to this site is very helpful for those times when you feel particularly alone or overwhelmed. Otherwise, I do feel like the isolation gets better overall. I still have moments where I feel isolated or wish I could talk with a fellow GPA patient in person but luckily this site is a great way of keeping in touch with people going through similar things. I am close in age to you (26) so if you ever feel like lamenting the pains of being a GPA patient in your twenties, feel free to message me! Good luck with everything

[Hege]

Thank you all for great advise! I've been reading through a lot of the old posts and feel like I'm getting my head around all this craziness that comes with this diagnosis.
My treatment is going great. Started tapering down on preds a couple of weeks ago so down to 30mg now and then another 5mg on Saturday. So far so good and crossing my fingers it'l stay that way. Since my first post I've started both Amlodipin for my high blood pressure and Selo-Zok (beta blockers). Having another Rituximab infution in November, so for now it's just avoid getting sick and having check-ups with my doctors. I feel eerily good, which for some weird reason worry me a bit. It's almost to good to be true

[annekat]

That's great! If you feel like you are doing well, you probably are.

[drz]

You most likely are doing better but remember that pred at higher dosages can create euphoria that might lead you you to feel better than you are so just be careful and enjoy the nice feeling. At higher dosage is easier to taper pred faster. It seems to get harder when you get down to the lower dosages of single digit.

[Jeanette]

Hi, I'm not the one with Wegener's my son is.
He too went through what you're now going through.
He was just 13 and lost his hearing in both ears. He was finally diagnosed 8 months later.
He's was rushed into hospital there and then, but on a steroid drip for 4 days, then he was having chemotherapy once a week, then it went to once every 3 weeks for about 10 months.
He was on 150mg of Azathioprine a day and steroids 3 times a day.
They cut out the Steroids after after his chemo so that just left him on the Azathioprine. Over the years they also cut his Azathioprine down to 50mg a day. Now 8 months on Jonathan (My son) is off Azathioprine and is in remission. He still sees a specialist ever 3 months, and he's doing really well.
Please don't feel alone, Jonathan was very depressed when he was first diagnosed, he could not go to school and had to have a tutor. But he's got great friends and family that got his out of it.
I went through a very bad place myself, I felt so guilty thinking I could have done more. But I just keep reminding myself, yes he's got GPA but he's well and happy. He's even going abroad to Spain in September.
If at anytime you need a chat I can ask Jonathan to come on here to speak to you.
Love Jeanette x