New to forum, not new to Wegners

[samsgang]

Hello everyone,

We just found this site, and have been browsing it, and it is so helpful to find others who unfortunately, know the struggle. I work for an ENT, and we see several patients with this disease in our office. (back when we were originally diagnosed, it was suppose to be so rare? story to follow) however, in our lifetime, we know personally of 4 people with it, and that is besides the patients we see in our office, who have this disease.

Our story....My name is Candy (writing) and my husband is the one with Wegener's. (I guess it is GPA now?) He is part of this posting. Anyways, my husband was originally diagnosed with Wegener's back in 1997. It showed up for him in his kidney's at the time. We were still newleyweds, I was pregnant with my first child, (now he is 18 almost 19 years old) and thank God, two other children that have followed. We are believers, and find our support in God, and there are answers to prayer and miraculous stories, but understanding that not every one is a believer, that is all I will mention of that, unless asked.

Anyways, long story very short, we were diagnosed by a Kidney specialist in 1997 and his advice was "get treated NOW!" We were terrified, back 20 years ago, less was known, and it was rare, and we felt so alone. Needless to say, we got a second opinion at the UW. We were praying that my husband wouldn't have to be treated. (Okay, God is too big a part, I can't leave the fact that we prayed out.) We ended up seeing (by "accident") Dr. Kauser, the top doctor in the nation on this disease, we were later told. I was a 26 year old young women, who just picked the phone up and scheduled this appointment. We were able to get in fairly soon too. After a full day of work ups, (we prayed before we went in that God would give us direction through this doctor) the doctor set back in his chair and said, "well, if I were you, I wouldn't be treated right now." It ended up that Sam's numbers were very low. We felt sheepish like we went behind the kidney specialist back, (we were young, and he stated we didn't have a choice as to whether we would get treated) Later that week, we got a call from the Kidney specialist who called to let us know, he had the reports that we had gotten a second opinion, and that he was going to back Dr. Kauser up 100%! He said to us, "Do you know who you just saw?" to which we replied, "no" the Kidney specialist said, "you just saw the top doctor in this nation on this disease, he wrote text books that I studied out of, you had better do whatever he told you to do! I look to him as a mentor!" The kidney specialist was excited too, because he got to talk to the UW doctor on the phone.

So, we went on our merry way, 3 children and 21 years of marriage symptom free until, January of 2016. Symptoms flared off and on during this new season. (Again first time in 20 years) We honestly did not even think it could be Wegener's. It was off of our radar to be honest. We had since left that diagnoses behind. So by early April, my husband was limping at the end of a regular work day, all his joints through out his body were sore. We went to prompt care 3 different times in that time frame, and they always sent us away. Telling us they didn't know what it was. For the past month my husbands eyes had become blood shot, the doctors gave him eye drops for pink eye. That is when a light bulb went off in my head (finally, I know), because, I knew it wasn't pink eye, no one else in the family had gotten it, for one. So I got online and googled red eyes, what are causes? Boom, Wegener's pops up! We were in the doctors on Tuesday, and he was hospitalized Thursday! 3 days of massive doses of steroids. (I guess it is a common treatment, but we were completely new to this diagnoses all over again!) So Sam went through several months of 60 mg prednisone at release, then slowly weaned down, and is on a lower dose of a 1.5 year of chemo treatment)

Fast forward again to this past weekend.

Well, after a call from our Kidney specialist who is overseeing all of our labs and treatment about two weeks ago, when he stated, "he could not be happier with our progress and labs" we got a call this past weekend from a doctor we have never seen, (filling in while the other one is out), this doctor wanted us to be treated 3 days in a row again with the 1000 mg and then place him back on the 60 mg. This was all due to elevated anca titer. Our regualar doctor will back on this coming tuesday 12/27/2016. We went over tests, and results, and the only thing that went up was anca titer, all the other blood tests we monitor, especially the creatinine, is all within normal limits.
We have chosen to wait through the Christmas weekend, and we will be retested on Tuesday when the doctor comes back, and if by thursday, the results are still elevated, and if we are advised by our regular kidney specialist, we will of course, go and be treated again.

This is our story. Thank you for reading and your support.

Candy