User Tag List

Likes Likes:  17
Page 1 of 8 123 ... LastLast
Results 1 to 10 of 78

Thread: New old guy on the block

  1. #1
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,195
    Post Thanks / Like
    Mentioned
    13 Post(s)
    Tagged
    0 Thread(s)

    Default New old guy on the block

    Hello Everyone,

    My name is Pete Schaeffer. I live in suburban Columbus, Ohio. I'm 65 years old and was diagnosed with WG in January 2011. The disease presented with a persistent ear infection (and has pretty well clobbered the hearing in my right ear), night sweats, a dry cough, and loss of energy/appetite/weight (lost 25 lbs at onset). Fortunately, my docs said I had "mild WG" as there was no kidney involvement and the lungs and sinuses have pretty well cleared up since treatment began.

    Prior to diagnosis, I was leading an active life. I swam and walked for fitness daily - swimming 1,500 meters in 40 minutes twice a week and walking 3 - 4 miles in 45 - 60 minutes the other days plus lawn work and helping my wife with housecleaning.

    I got into remission last summer (and regained all of the lost weight - unfortunately as belly fat!). At that time, my WG meds were 100 mg cytoxan/day, 40 mg prednisone/day, and 1/2 bactrim tab/day.

    In January, I had a flare that I think resulted from too quick a decrease in prednisone coupled with a change from cytoxan to immuran. I was sick for another six weeks. Being retired has made this a little easier to deal with as I have no pressure to get back to work. My wife is content for me to recover at my own pace and not overdo things.

    I'm on the mend now. Back to 100 mg cytoxan/day, 20 mg prednisone/day, and 1/2 bactrim/day. My last CT scan of my chest was pretty much normal. Blood work showed blood in the urine. Doc is now worried that cytoxan is causing some side effects in my bladder, so I'll see a urologist next week. Hope it's just a UTI that failed to respond completely to treatment, but we'll see. It's just annoying to have to pee every 30 - 45 minutes.

    I am resuming my fitness activities, but will have some work to do to get back to where I was before WG onset. I'm optimistic that I'll get there. I've learned that this disease is very subtle in presenting flare ups. I let the one a couple of months ago go for a few days before I realized what it was. By then, I was getting pretty sick, and it took awhile to get straightened out.

    I am being treated by Dr. Matthew Exline of the Lung Institute at the Wexner Medical Center at The Ohio State University. I spent a week in University Hospital in January 2011 while being diagnosed. Was also seen by infectious disease specialists (who thought I might have TB) and a nephrologist (who ruled out kidney involvement).

    In summary, I'm grateful for the shape I'm in. I've read many other posts from people who are a lot sicker than I, and my heart goes out to them. I hope that more can be learned about effective diagnostics and treatments to minimize the suffering of those afflicted with this strange disease.

    Best of luck to all.

  2. #2
    Join Date
    Mar 2012
    Location
    TN
    Posts
    20
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Pete.

    Welcome to this forum though I'm sorry you have a need for it. I have no information to offer. We are brand new to WG. We have 5 children (15 yog, 13 yob, 12 yog, 8 yob and 5 week old girl) Our 12 yo daughter was diagnosed in early Feb. so we are still learning all about WG.

    Like you, my daughter was very active prior to WG. She plays soccer and in Jan just finished the course (and passed) to be a certified soccer ref. She's hopeful she'll feel up to working a few games before the end of spring soccer.

    It's wonderful to read that you have a loving and supportive spouse. I'm sure that is a huge blessing as you recover.

  3. #3
    Join Date
    Mar 2012
    Location
    Hamilton , ON. Canada
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Pete for your Story....
    I haven't been dx with WG yet, but i do have all of the tell tale signs, such as joint pain...eyes and ear problems, ....Going to see my rhumatogist on Tues...and hopefully someone will listen... Went to the Emergency ward on Friday, asking them to check my kidneys, and they did find traces of blood in my urine, and told me that i didn't have WG, and guess after me telling them to check for WG, they said i didn't have it.... I asked how they could be sure, when it seems to me based on all of these stories, that most dx are done by biopsy, and the other tests that i am sure that they haven't done... They did say my lungs were clear and blood was fine... besides the blood in the urine.... I thank God this group for if i hadn't found this group, i am sure i would have gone insane, meaning there is hope,....... Thanks Pete for your story, i do appreciate them .... will follow up with everyone , once i see the specialist ,, Any advice that you can give me to ask my Dr... i will tell my story, on how i believe that i have this,,, but i have written it 3 times already, but this darn computer, if i hit the Cap key, it deletes it all...and frankly, who has that much time.. Have a wonderful day.... thanks again

  4. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,195
    Post Thanks / Like
    Mentioned
    13 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Isabella,

    The test you didn't mention is the one that led to my diagnosis: the ANCA blood test. I had both a bronchoscope and a nasal biopsy that showed evidence of granulomatosis, but the ANCA test took away other possible diagnoses.

    Good luck!

  5. #5
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Pete. Good to hear that you do doing so well. Major organ involvement is boring--or, I should say, over-exciting. Keeping in shape does help one's overall heath, even when there are these, er, "anomalies". I hate to tell you, though: It is hard to regain the muscle mass while on prednisone--especially at our age (I'm a couple of years younger, but sor of in the geezer class). Bladder problems with CYX are common, and potentially serious. Please do check into this and get all the details.

    I'm not sure about your Cap Key issue, Isabella, though there is some unknown key that I have hit accidentally once in a while that makes everything go away. Sometimes, a simple "UNDO" gets it back. In any case, I have taken to, periodically doing a COPY ALL, especially with longer posts. We'd love to hear your story, in any case. I'm thinking the same thing as Pete: How, in fact, did they rule out WG? Many Weggies do not have lung involvement, and any blood in the urine is not "fine". It can be UT related, or kidney related, and it is important to know which.

    Al
    Last edited by Al; 03-26-2012 at 06:50 AM.

  6. #6
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,956
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Pete. I'll be 60 this year so am knocking on the door to "geezerhood". (I'm not sure a woman can be a geezer, so maybe I'll be an "old bat" instead.) I was dx'd in April 2011, and my case sounds similar to yours, starting with a persistent double ear infection in Oct. 2008. I was not as physically active as you, but that doesn't seem to make a difference; Wegs can strike anyone. I haven't been declared in remission but feel I'm close. I'm still on CTX but it's being tapered instead of moving me to a milder drug, and that seems to be working OK at this point. I'm on 10mg. prednisone and Bactrim DS 3x/wk. My original ANCA reading was very low. My dx was by nasal biopsy. No kidney involvement or bladder problems so far. Everyone's case is a little different. If you have to have Wegs, I'm glad you found us, and hope you continue to post on a regular basis. This forum became a big part of my daily life even a month or two before I started posting. I hope your latest flare up continues to be quelled, and that the blood in urine and any bladder problems or possible kidney involvement are dealt with before they become very serious.
    Anne, dx'ed April 2011

  7. #7
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,775
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by annekat View Post
    (I'm not sure a woman can be a geezer, so maybe I'll be an "old bat" instead.)
    Old geezers & bats...OMG! Anne, don't make me laugh...I start coughing!! LOL!

    And welcome Pete...I am in pretty much the same boat as you, even the supportive spouse! I just was declared in remission this last week...yea! But I know the journey has just begun, and like you, I hanker to get back into good shape (am a golfer in the desert), so now moving to next step to decrease pred to non-existence! It will always be something, but, as we all are, am determined to keep the boat afloat! Best of luck!

  8. #8
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Geezers and bats? ("Geezettes"?) You see, Pete, we Weggies have a sense of humor that is startling, convoluted, and even out of control. We will giggle, titter, chortle, and wheeze at the darndest things. They sy that laughter is the best medicine, but I think it is more complicated that that. I think the therapeutic part comes in the execution: Sort of like, if we can elicit a "spit take", as they call it in Hollywood, we win. Congratulations, Anne! I would love to have seen Don lose his soup!

    Al

  9. #9
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,956
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    Al, I like "geezettes"! It sounds graceful and glamorous, sort of like "gazelles". Yes, we weggies do grasp at straws for entertainment and humor!
    Anne, dx'ed April 2011

  10. #10
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by annekat View Post
    Al, I like "geezettes"! It sounds graceful and glamorous, sort of like "gazelles". Yes, we weggies do grasp at straws for entertainment and humor!
    I'm only 56, do I have to wait four years to be a geezette? Can't you make an exception? Maybe I can be a geezette in training? (LOL)

Page 1 of 8 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •