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Thread: New to forum, not new to Wegners

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    Default New to forum, not new to Wegners

    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
    Last edited by samsgang; 12-26-2016 at 08:35 AM.

  2. #2
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    Welcome to the forum. We received a lot of great information and support on this website.
    If you haven't done so yet, please check out the following website: Vasculitis Foundation.
    Also, check out to see if Rituximab from www.gene.com will work for your husband.

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    Welcome, Candy. That is an unusual story, but shows how variable and sneaky this disease can be. With the joint pain and red eyes, Wegener's might be attacking different parts of the body besides the kidneys, and you might end up with a lot of trouble in the upper and lower respiratory tracts. You might consider consulting a rheumatologist with vasculitis experience (they don't all have it) who will oversee your case if things get worse in those areas and will be able to work with the other specialists such as nephrologists, ENTs, opthalmologists, etc. There are some excellent rheumies at UW and also at Virginia Mason. I'm in Olympia and am pursuing an appointment with a local one who may work for me. But if you are closer to Seattle, I'd go for those places. Good luck.
    Anne, dx'ed April 2011

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    Had the disease for 20 years! Wow!

    One of the top docs in the PNW now is Curry Koenig at U of U in SLC. He came from the Cleveland Clinic and started the U of U Vasculitis Center. He was my 2nd opinion when I was first dx'ed with the disease. He and his team are pretty amazing. When he took me on for a 2nd opinion, things happened real fast. I think I saw him 2 or 3 times in 2 days plus I saw about 4 other docs to include ENT and Neuro. After he confirmed the original dx, I had 2 or 3 follow-up apt's and then slowly weined myself from Curry and started seeing a local rheumy. I'm sure I could have stayed on with him, but I wanted to free him up for more complex patients. ( clicky for details )

    PDX has a lot of direct flights to SLC for only $200 round trip -- such a deal!! Also, U of U has a lot of RV parking right at the hospital. As I recall, the RV parking has 30 amp, but no dump. We stayed at Hill AFB in Ogden, so I'm not all that familiar with the park at U of U.

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    Welcome to the forum, Candy and Sam.
    Wow, 20 years of "WG's sleeping" is something great ! Thank you for sharing your special story.
    Is Sam only on pred ? Pred alone is in NO WAY enough to treat wg.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #6
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    Hello everyone. Thank you for all of your reply's. To answer the last question, yes, in addition to Pred. we were treated with Cytoxin (I honestly don't know the spelling) and the infusions, then the prednisone. Sam was completely weaned off of prednisone and switched to a "milder chemo" in October. He did fine, lab work wise and symptoms wise, until the week before Christmas. Then labs came back stating he was having a flare, (no symptoms yet.) Just the Anca Titer was going up from a past negative read. We were disappointed to already have a relapse so quickly. Ugh! I now realize even more so what a gift of 20 years of remission with no treatment was, now that we have had to be treated!

    We will be starting Retuxamab (sp?) infusions this next week. And 60 mg of pred again! (Which was discouraging) The doctor said he is going to wean Sam off sooner than he did the last time from the high doses of Pred. this time around.

    Does anyone know how long Retuxamab infusions take? Sam is just wondering with his work schedule how this will work out.

    Sam does not like reading on here, because honestly, it freaks him out. I, however, do because I like the information, and we have already experienced the extraordinary miracle of 20 years of remission, so I know that anything can happen in each of our Weg. cases. Sam read the wrong thing I think when he got on here. I know to filter it all through a grain of salt. Not all experiences will be the same.

    Some of this information can be so helpful. Thank you all for sharing, I'm learning alot.

    I don't know what the future holds, but I do know who holds our future. Walked through enough valley's with Him to know I can trust Him.

    (sorry, can't help it! I can't not give credit where it is due in our case)

    Candy

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    Not all experiences will be the same.
    That is absolutely correct... I don't think I would be out of line to suggest that most of the regular people on the forum probably have a more active case of wegs than most. We have a lot of people who come to the forum, stay around for a month or two, then disappear for months or years. We have many, many more people who are lurkers and never join. I think the forum regulars represent a very small fraction of those diagnosed with wegs. Many wegs people are living relatively normal, pain free, symptom free lives.

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    Hi Candy,

    The first rituximab infusion will probably last about five hours, assuming no complications. The flow rate is very slow at the beginning, but is gradually increased. Sam will also be given an IV steroid (solu medrol) and an antihistamine (Benadryl) before the rituximab starts. He may also get some Tylenol. If he has an allergic reaction, they will stop the infusion, treat the reaction, and resume the infusion at a slow rate.

    For most of us, the side effects are pretty benign -- mild fatigue for 24-48 hours following. I haven't found the fatigue to be debilitating at all. The steroid may jazz him up for awhile (maybe 12-18 hours), and he may have trouble sleeping until it wears off.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Thanks every one! All of your comments really have encouraged me. So, it is good to hear from you Andrew that there are a lot of people doing well. And Pete, thank you for answering my Rituximab questions. I read both of the replies to Sam, and he appreciated hearing from you both. I honestly find this site invaluable for your information, and I said to Sam, "see, doesn't this make you feel good, that you are not the only one walking this road?" Community is where it is at!

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    God has blessed me too.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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