Wow!

[GregS]

Hi everyone. Wow! That's all I can say. I found and joined this forum just last month, and it has been an unbelievable resource. Not only on the "what to expect" and treatment threads, but the truly inspiring stories many have told. A big thanks to all for sharing so openly.

My problems started in the summer of 2010 when I was diagnosed with my first autoimmune disease, Ulcerate Colitis. It took a couple of years to get that to an acceptable number of trips to the boy's room.

Next, in Oct 2015, I was seeing a liver specialist about a golf ball sized mass on my liver. Long story short, he removed almost half my liver, but during the prep, he diagnosed me with autoimmune disease #2 called Primary Sclerosing Cholangitis (PSC). Basically it attacks the bile ducts with an end result of needing a liver transplant. Fortunately for me it was caught early and I still have many miles left on mine.

My latest adventure was a trip to the hospital due to strange swelling and joint pain all over (ankles, hips, wrists, knees, etc...) accompanied with a crazy high fever. They happened to xray my chest due to a chronic cough, but was discharged before they got the results due to the fever breaking. A few days later my GP called me to say they found lesions in my chest and wanted to follow up. I saw him the next day and he booked me for a CT. While there he saw my joint issues and decided to send me to a rhumy since I have other autoimmune issues. Originally, I went to see the rhumy about the joint issues, but my chronic cough and chest xray came up in the conversation. The look on her face changed so suddenly I knew alarm bells were going off. What are the chances that she happened to be one of the 50 doctors in Canada that are part of CanVasc, a Canadian network for research on vasculitides. With the results of a ANCA blood test and the CT scan, she confirmed GPA last month (June 2017). After reading so many posts on here, I'm happy to say my symptoms are limited to just the slight shortness of breath and cough. I guess the stars were aligned for an early diagnosis.

Greg

[Jaha]

So glad you found us and that you are doing ok now. You have been thru the wringer. Please feel free to ask all questions and thanks for sharing Your story!

[Alysia]

Wow indeed. Thanks for sharing, Greg and welcome to the forum.
I am glad you were lucky to have the right dr. on the right timing.
What treatment did you dr. put you on ?
Where do you see her ? (If its ok to ask. I am just curious if she is one of the docs that treated my beautiful Phil)
It is interesting that some of us have more then one AI diseases. I started with WG and in the last year also got colitis. Mine is microscopic colitis. I wonder if there is any connection between the diseases...
The forum has "waves of activity", sometimes more "quiet" like the last few days, and at others more active...
Please feel free to ask anything you feel like.
Sending prayers. God bless you.

[MikeG-2012]

A lot of us were not so lucky to have a reasonably fast diagnosis. You are indeed fortunate that they found it and that you were at the right place at the right time.

This is an amazing e-gathering place of amazing people from all over the globe!!

Wow, indeed.

[GregS]

Hi Alysia. My doc is Dr. Dhindsa, and I'm fortunate enough to live only a 10 min drive from her office! I've heard how so many have to travel long ways to get to their's. I live in Surrey, BC, which is just south of Vancouver. Since my symptoms are so minor, she is holding off any treatment until I see my respirologist on the 26th. They'll do a bronchoscopy to evaluate the current damage and decide what the minimal treatment I need. She said that the goal is to give just enough to treat thereby minimizing side effects. Since I'm feeling pretty good right now (relatively), I tend to agree that rushing into drugs isn't wise.

Funny you mentioned the connection between AI diseases. Dr. Dhindsa mentioned that there was research happening right now in Canada on the relation between certain forms of colitis and GPA. I've being doing my own research into AI diseases over the last number of years (why not). Mostly to combat all the bad info everyone keeps sending me from their aunt's cousin's friend's naturopath or Facebook cures. Some very interesting things have come up and look very promising. Mostly around the study of the human microbiome. I can site numerous published medical articles linking our microflora to multiple AI diseases, obesity, certain forms of autism, and more. There have been some incredible findings since the early 2000s, but the most surprising is the enormity of the complexity that exists in this symbiotic relationship we humans have with this "new organ" scientists call the microbiome. Alas, this should probably be left for another thread if anyone is interested.

Thanks again.

[Pete]

Hi Greg,

Cleveland Clinic (among others, I'm sure) is researching the biome as a possible gateway to the cause of GPA/Wegs. Gary Hoffman and Carol Langford are two of the primary researchers (just trying to give your search a couple more terms).

Hope you continue to feel better.

[GregS]

Thanks Pete. I'll add this to my research diary. A quick Google search found a webinar (https://youtu.be/FnzMlblHrp0) he gave in 2015 that included the role of microbiomes and how they interact with genetics, gender, age and immune status to produce disease. I look forward to watching it.

I don't know about anyone else, but I was rarely ever sick before 2010. Going over my medical history (that was a lot of work to collect), I noticed the high level of antibiotics I had for pneumonia just prior to everything going downhill. Hmmm... coincidence? Maybe, but food for thought.

[Pete]

I don't know about anyone else, but I was rarely ever sick before 2010. Going over my medical history (that was a lot of work to collect), I noticed the high level of antibiotics I had for pneumonia just prior to everything going downhill. Hmmm... coincidence? Maybe, but food for thought.

I was also very healthy before disease onset. A cold only lasted a couple days. I almost never got sick. I was in great shape. Once the disease hit (dxed a month later), I was laid low for about 15 months. Found this forum about a year in and took the advice to get a Vasculitis specialist. Been pretty well since...

[Alysia]

Hi Alysia. My doc is Dr. Dhindsa, and I'm fortunate enough to live only a 10 min drive from her office! I've heard how so many have to travel long ways to get to their's. I live in Surrey, BC, which is just south of Vancouver. Since my symptoms are so minor, she is holding off any treatment until I see my respirologist on the 26th. They'll do a bronchoscopy to evaluate the current damage and decide what the minimal treatment I need. She said that the goal is to give just enough to treat thereby minimizing side effects. Since I'm feeling pretty good right now (relatively), I tend to agree that rushing into drugs isn't wise.

Funny you mentioned the connection between AI diseases. Dr. Dhindsa mentioned that there was research happening right now in Canada on the relation between certain forms of colitis and GPA. I've being doing my own research into AI diseases over the last number of years (why not). Mostly to combat all the bad info everyone keeps sending me from their aunt's cousin's friend's naturopath or Facebook cures. Some very interesting things have come up and look very promising. Mostly around the study of the human microbiome. I can site numerous published medical articles linking our microflora to multiple AI diseases, obesity, certain forms of autism, and more. There have been some incredible findings since the early 2000s, but the most surprising is the enormity of the complexity that exists in this symbiotic relationship we humans have with this "new organ" scientists call the microbiome. Alas, this should probably be left for another thread if anyone is interested.

Thanks again.

Thanks for sharing, Greg.

My beautiful Phil saw his docs on calgary, regina and swift current. At the area of BC we have LisaT and jola57 .
I am glad that you have such a great dr and so close to your home.

As for treatment, some treatments for colitis are the same as those for WG. Are you getting any treatment for your colitis ? Anyway, in my humble opinion it is better not to leave the wg beast without any treatment.

Thanks a lot for sharing the info about microbiome. I had no idea about this issue. Sounds fascinating. marta is doing some research about AI diseases. Check her threads here.

As for using lots of antibiotics before wg onset, it was my case too. I had constant throat infections few years before the acute onset. Although I was never healthy and I actually find some symptoms as a kid that might have being wg.

Good luck at your appointment with the respirologist. Please update us.

[vdub]

Mostly to combat all the bad info everyone keeps sending me from their aunt's cousin's friend's naturopath or Facebook cures.

We work very hard to eliminate this stuff. I'm glad you're searching credible medical research.

It sounds if you have been through the wringer. It seems as if it is never ending at times.