I found you!!! From Ontario, Canada

[eyeopps]

Hi All
I have been browsing the site. I am a newbie to forums, having never needed them before, so forgive small errors in posts.
I have just been diagnosed with GPA. It took 6 months to nail it down. That was what I would call an interesting journey!!. Started with what we thought was just bad headaches that progressed to loss of hearing and tinnitus.
Then the, what I call the roving ailments, started. Sore swollen leg for a couple of weeks, sore back for a couple of weeks and so on. The symptoms keep moving. At one stage I joked with my family doc that it must seem like I was going crazy!!
Eventually the ENT sent me to an infectious diseases clinic and within three weeks they had if down to GPA. We are sill in the stage of figuring out if and how much organ damage has already occurred. Had kidney biopsy yesterday and should know results within a couple of weeks.
Currently only on Pred (50mg) and decreasing slowly until we are down to 10mg. Also on Mylan-Risedronate. Further meds will depend on kidney biopsy results. I cannot complain about the doctors. They have all been fantastic. I have not met one that does not seem to really care.
I have to agree with many who have this GPA. The not knowing what was happening to you was far worse than knowing. At l east once you know you can move ahead. I am encouraged by what I have been reading on this site. There is a light at the end of the tunnel!!
Andy

[renidrag]

Welcome Andy, a great group of people here. From what I can tell Risedronate is for bone loss. Are you on anything else beside Prednisone for the GPA? Also I would ask if you are seeing a Rheumatologist? You will find you have quite a few Canadian weggies here, even Batman.
Dale

[eyeopps]

Yes the Rheumy is what I am calling the boss doc! She is extremely knowledgeable. I have seen 9 different specialists during the search!

[windchime]

Welcome to the forum Andy. As you've already been browsing the site you know there is a wealth of information here about this disease. I'm glad that you found us, it's unfortunate that you had to. Feel free to vent, ask questions, or share information. There is usually someone on here 24/7 as we are a global community. Good luck in with your biopsy and please keep us posted.

[Alysia]

Welcome to the family, Andy
Thanks God they were able to dx you early enough.
I hope that you don't have kidney's involovement.
anyway you will have to get "decent" treatment, more then pred.
I guess they want to see how "strong" the treatment needs to be.
please update us.

[Dirty Don]

Welcome Andy, glad you found us! LOL! We are an eclectic group with a rare disease...sheesh. But, lots of compassion and experience on here to share...ask questions as you progress thru this journey, share experiences, and vent when needs be! As for your most likely journey, if your kidneys are OK then docs will most likely use mtx along with the pred to slow the disease down. If it doesn't work or your kidneys are degrading, then I would suspect something like rtx would be used - please ask the docs why & how long & when each time they present protocols to you! Don't be afraid to stay on pred for times when you need it...some people are so desirous of getting off the drug(s) that they tend to hurry the process which usually ends up in mini flares or the like. Best to you!

[Jaha]

And y
Welcome to the knowledge base for Wegs. It sounds like you're medical team is on top of things.
Wishing you all the best.

[mishb]

Hi Andy and welcome to forum.

I'm glad you have a great team on your side.......this is of utmost importance.

Keep on moving ahead Andy - it's the best way to go

[Pete]

Welcome to the gang, Andy!! Hope your symptoms abate in due course and that you get to lead a near normal life. Lots of helpful folks here with insights about treatments and docs.

Good luck and better health!!

[annekat]

Welcome, Andy! Sounds like you have an optimistic attitude, which many of us get once we realize there is hope for a smooth recovery from the worst of our symptoms, and a possible remission in time. I hope the kidney biopsy results will be good and you can get by with MTX and pred for the time being. I'm glad you like your docs and feel comfortable with them; that counts for a lot! I hope you will continue to post and participate in discussions, ask questions, etc. Looking forward to hearing more from you.