Just diagnosed with GPA in last week

[duffybear]

Like many of you, I have had a run of very bad health (sinus infection, terrible cough w/laryngitis, then severe aching joints and swollen thyroid) for months, all while trying to work. Everything was treated as a discreet problem, until I started fussing and demanding to see an ENT and get tests for inflammation. I have worked for 17 1/2 years in an inner-city mission/shelter, helping people with welfare problems, tenancy issues, etc. I figured all those years in a high-stress environment had caught up with me - and I was on the verge of retiring anyway. (I am fortunate that, unlike many of you who got it when you were younger, GPA waited until I was 64 years old to strike).

Long story short - the ENT, to his credit, threw a fit and put me into the ER, writing a very strong letter directed to the respirology department. While everyone was slightly rolling their eyes (thinking this ENT was a little over the top), this did end up with my getting a diagnosis of GPA - which I probably wouldn't have got until much later, when more damage had been done. (It doesn't seem to have got to my lungs or kidneys.) So although my parting gift on my retirement date, Dec. 19, was the diagnosis of GPA, I am very thankful everything worked out as it did.

Right now, I'm on 50 mg. of prednisone for a bit, then as supposed to drop down to 25 mg. We'll see how it works. At least I can walk again!!! (I had a whole month where I was living on Tramacet, while going to work/limping around - it was awful.) I am also very grateful that, if I have to have a disease like this, I live in the time and place we live in - if this had happened in the 1950s, or if I lived in a 3rd world country...well, we all know what that would mean.

I look forward to hearing/reading your stories and thoughts - it's good to have community in this odd situation.

Susan

[ozterry]

Hi and welcome to our family. Like you, I am older than a lot of people on here (67) and thanks to a very astute ER, I was diagnosed quickly and received treatment before any real damage was done. I am now down to 20 mg of prednisone and a daily dose of 150 mg of Endoxin (cyclophosphamise). Apart from excessive fluids, tiredness, shortness of breath, and very swollen feet and legs, all is well in my world. Of course I have other medical conditions that are not helped by the addition of becoming a weggie, but I am coping as good as can be expected. I hope you too, have similar results and quickly. But you will find everyone here, very supportive and helpful.

cheers
Terry

[mishb]

Hi Susan and welcome.

I am another from Oz, so as you can see, you will find people on here any time of the day to help if and when required.

I love my ENT for nearly the same reason as you seem to love yours, and I'm glad you persisted to get the referral to see one.

What part of the world are you in, just out of interest.

[Pete]

Hi Duffy,

I got hit with this dumb disease at age 64 also. Now 68 and taking the advice of the pulmy who helped diagnose me: Take your meds as directed and live your life to the fullest. I've been fortunate that I now lead a normal (pre-wegs) lifestyle.

Good luck!

[duffybear]

Thanks to everyone for their kind comments. I am hoping, Pete, that I will get to the stage where you are. I'm fairly fortunate, Terry, that I don't seem to have any other major health issues (other than that I could stand to lose some weight and get in shape!). Michelle - I am in Vancouver, Canada.

It's reassuring to know you folks are out there!

Susan

[annekat]

Welcome to the forum, duffybear. I am in Olympia, WA, a ways south of you. There are some other Canadians on the forum from BC, and pretty near Vancouver, I think. Perhaps they will see you and respond and you can compare notes and maybe even meet. Joining this forum was a great move, you will find lots of support and friendship on here as well as learning about GPA and the many ways it can affect people, and how we all deal with it. I hope to hear more from you soon!

[Randy]

Welcome to our forum. I was diagnosed at 58 and like you feel I was lucky to have so many good years before this condition hit me. There are many people here in there 20,s and 30's. It took a long time for the doctors to realize that I wasn't a hypochondriac and there really was something wrong with me. I was very sick for a while but have been in full remission for almost 5 years now. I still work, at 64 mostly because I enjoy my job. GPA is not the end of the world, it is manageable for most of us so keep positive. I'm just down the road from you in New Westminster. I spent a lot of time at VGH, If you need to be in the hospital that is the one to be in, in metro Vancouver. Go there first

[duffybear]

I had the very good fortune to be sent to the ER at VGH - it was the respirologists there that confirmed the diagnosis last week, and put me on prednisone. I have an appointment with them again on January 5, but it sounds like I'll have to find a rheumatologist.

It's interesting, and a tad overwhelming, to read the many different experiences of folks on here. So many, in so many different situations, some so very difficult. My heart breaks for some posters. Still, there are lots of good things that happen too.

[LisaT]

Who is your ENT? I was tentatively diagnosed by an ENT in Vancouver who is an expert in stenosis and not in bedside manner. I'm also curious who the respirologists are. I saw dr. Carlsten who I really liked, but he was not convinced I have WG (I'm ANCA-negative). My rheumy Dr. Kur is associated with VGh and I first saw him through the rapid access clinic when I was in the midst of being diagnosed with RA 4.5 years ago. He's a very nice guy and I'm still trying to figure out whether he's going to help me feel closer to normal. He's definitely helped me get breathing better and joint inflammation under control, but I sometimes feel like he doesn't really get the huge impact my remaining symptoms have on my quality of life. Still he is with UBC, VGH, head of the arthritis society and has access to all the right facilities and specialists should anything urgent arise. So I keep going back and reporting how crappy I feel and asking for rituximab. Sorry, I don't mean to steal your thread but since you're in Vancouver thought I'd share doctor details! I'll connect more when I have some more time and energy. ��

[duffybear]

Hi Lisa - Happy to share any info with you! My ENT - who I had never seen before, he's apparently new to Vancouver (possibly from China?) - is a very oddball guy, who - to his credit, in my case - went into high panic mode when he saw crusting in my trachea. He wrote this very over-the-top/"my patient could die" letter to the respirologists at VGH, which is why I got a bronchoscopy so quickly. We were all kind of rolling our eyes (even I, sick as I was, didn't envisage such a diagnosis). However, his instinct that something was seriously wrong was correct and I owe him a HUGE thanks. To be honest, I suspect he's never seen GPA before. I'm not sure I'll eventually end up with him, but I feel blessed I saw him. The respirologist I saw at VGH was Dr. Jeremy Road - I think he may be the head of the Respiratory Ambulatory Unit at VGH. I think he ,too, was a little surprised by the diagnosis - he kind of said to me that day, a little astonished, "well, you actually have something", viz GPA. I need to ask him, when I see him on Jan. 5, about other meds beyond prednisone and also how/where to find a rheumatologist.

I'm a bit clueless at this point about moving forward, so I'm not much use to you otherwise at this point. However, I did work for almost 20 years as a legal advocate in Vancouver's Downtown Eastside (helping people with disability applications, welfare, tenancy issues, etc. - I happened to retire the same day I got the GPA diagnosis, what fun), so perhaps I can use my advocacy skills for myself and other local GPA folks this time! (Having said that, I'm also pretty burnt-out and worn out, so maybe I shouldn't over-promise anything...)

Btw, I looked at your profile - you and I may know people in common - I've worked a fair amount with public interest advocacy lawyers here in Vancouver. (I am not a lawyer, though, just do administrative law as noted above.)