User Tag List

Likes Likes:  17
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 78

Thread: New old guy on the block

Hybrid View

Previous Post Previous Post   Next Post Next Post
  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
    Dormansland, Surrey, UK
    Posts
    660
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Isabella1759 View Post
    .... I haven't been dx with WG yet, but i do have all of the tell tale signs .....
    I am sure Isabella you know the old saying "if it looks like a duck, waddles like a duck, swims like a duck and quacks like a duck then it is probably a duck". Having said that I, and I am sure the rest of us, will be interested to see what your rheummy says next week, do please keep us updated on your condition.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

  8. #8
    Join Date
    Mar 2012
    Location
    Hamilton , ON. Canada
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Tomorrow is the day, (seeing specialist) I know being positive is one of those things that will make my journey easier... But i am feeling sorry for myself, can't stop thinking how, or why, or what i did or should have done... having a hard time at work, where every one is grumbling about their work day, and they have no idea, what is going on in my life... I want to scream, and say, I wish i had ur ^&*&^ problems.. but no , instead i bit my lip from starting to cry, and i take my next call.... i am scared, and to deny that , It would be a lie///Sorry, i felt in any one has every been in my shoes, I am sure you've all tried them on once or twice... thanks for listening... isabella

  9. #9
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,712
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Pete. Sorry you had the need to find this forum but so glad you did.
    I agree that laughter is the best medicine ........ or if it's not really, the taste is way better

    Isabella, I hope you find the answers tomorrow at your rheumy appointment.
    I pray that you do not have WG but it would be good to actually have an answer.
    I used to bite my tongue around my co-workers, you know those ones .....the ones that can't come in to work because they stubbed their little toe and it hurts to walk, or the ones that have a blocked nose ......... no worse, the ones that have a nose that wont stop running and they need to keep blowing and complaining at the same time.
    These days I just say "I'll swap with you" or "welcome to our world".......they soon understood what I mean.

    Take care both of you and remember to .........
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  10. #10
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,775
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    I wonder if Pete thinks the humor on here is one of the symptoms of WG!!! LOL

Page 1 of 4 123 ... 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
  •