User Tag List

Likes Likes:  28
Results 1 to 9 of 9

Thread: Not a diagnosis I expected

  1. #1
    Join Date
    Jan 2020
    Location
    Cleveland, OH
    Posts
    2
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Not a diagnosis I expected

    Hello all. I was recently diagnosed with GPA after a week in the hospital. Iím still feeling pretty gobsmacked by it all, just as recently as September I thought I was pretty healthy.

    Thought I was having a cold, then started having some intense pain in my jaw and face, so off to the urgent care clinic. Looks like I have a sinus infection, something I never had a problem with before. Weeks later and multiple rounds of antibiotics and visits to an ENT and nothing was improving. Now things had spread, pressure and pain and hearing loss in both ears. I used up all my sick time at work and even had to take some unpaid days off.

    My ENT recommended sinus surgery, correction of a minor deviated septum, and vent tubes in my ears. I went through with that, using my vacation time, hoping things would start to improve, and they did for a short time. At least as long as I was on prednisone following the surgery. My sinuses started feeling a little better, but I still had horrible pressure around my right eye in particular and constant headaches. My ears would not clear up, the pressure was driving me crazy and the hearing loss was getting worse. Meanwhile I was starting to feel off in other ways that I didnít connect to the sinus and ear problems. The ENT switched my antibiotics to two strong ones, and about a week later I just was feeling awful.

    My knees and feet ached and shot stabbing pain when I stood and walked. I had some trouble urinating, taking forever to empty my bladder. On and off fever. And a sharp stabbing pain in my upper abdomen/lower chest when I moved or inhaled too deep. So my wife took me to the emergency room where they were confounded by these seemingly unrelated symptoms. I honestly feel so grateful that they took my complaints seriously though, and they ran a battery of tests. When they found nodules in my lungs and some troubling bloodwork the doc decided to admit me for further testing.

    I thought maybe I was just having a bad reaction to the antibiotics or something. After seeing several specialists, CT scans, ultrasounds, a bronchoscopy, and so many blood tests they came back with GPA. I had never heard of GPA, and never would have thought I was likely to have an autoimmune disease. Iím still sitting here thinking ďOh man, what if theyíre wrong?Ē But I do think maybe there were some hints of this further back that I was just ignorant about.

    Right now Iím on 40mg of prednisone, which seems to be keeping the inflammation suppressed for a good chunk of the day, but by the late evening I feel things starting to flare up again. Still struggling with the loss of hearing and tinnitus, but the pressure in my ears has reduced and Iím not getting flashes of vertigo like I was. The aching joints has spread to my shoulders and elbows. I sweat like crazy when I sleep. The problems with urinating has eased but not gone away. The unfortunate thing is that I canít start treatment yet. A culture taken during the bronchoscopy turned up positive for aspergillosis so the Infectious Diseases doctor wants me to complete a four week course of antifungal before going on any sort of immunosuppressant.

    Right now the most stressful part is that I cant work in this condition. My job is fairly physical and involves climbing and lifting and working on high voltage systems, and being able to hear whatís going on around me is pretty important too with heavy equipment moving around. I have short term disability insurance through work, but Iím having a hell of a time getting them to understand all of this mess to get it approved. Theyíre used to simple problems I guess: broke a bone, be back when healed. Being sick is stressful enough without worrying about paying the rent.

    I just felt the need to express all this. Iíve been mostly cooped up in the house for a while now.

  2. Likes MINDYB77, Sajo, annekat, Alysia liked this post
  3. #2
    Join Date
    May 2008
    Location
    Canberra, Australia
    Posts
    1,522
    Post Thanks / Like
    Mentioned
    27 Post(s)
    Tagged
    2 Thread(s)

    Default Re: Not a diagnosis I expected

    Hey Jim
    That's quite a journey! I too am glad the hospital took you seriously. Pred is a miracle drug for us and I hope when you start treatment you'll start feeling better. There are many on here that have had the ups and downs of claiming insurance and they may have some advice for you on that topic too.

    How much of that four weeks is left to go before you start on the treatment? Also, can your doc increase the Pred in the short term? Might relieve some symptoms while you're waiting.

    Cheers
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  4. Likes annekat, Alysia liked this post
  5. #3
    Join Date
    Apr 2010
    Posts
    842
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Welcome Jim,
    Your story is remarkably similar to mine. I was working on a line crew when I first became ill- 40 some years ago. Lineco was my insurance then- might be yours? You are certainly in a great place if you need some of the best help in the world- the Cleveland Clinic. Maybe you are going there already. It sounds like you are getting good treatment so far. I went there a few years ago to get a consultation with Dr Carol Langford. They have some other doctors that are equally good for those of us with GPA.
    I too had the night sweats as an early symptom. I would wake up in the night and have to change the bedding because it was soaked with sweat and getting cold. The treatments have evolved since I began the journey way back when. It's good news for us patients.
    I can't think of any option for waiting out your fungal treatment before starting with the big guns. Don't freak out too much about the problems you are having now. Many of us improve dramatically after being on a primary treatment for a while.
    Prednisone is not fun to deal with. I myself am on 45 mgs for probably another two weeks as I wait for my Rituxan treatment to begin to take effect.
    I'm not sure what to tell you about being able to do your work . I eventually sought out a completely new line of work but not because of the GPA so much as just wanting a different line of work.
    After treatment (with Cytoxan) I gained a 20 year drug free remission. This was AFTER being extremely ill and hospitalized.
    No reason great things can't happen for YOU too.

  6. Likes drz, annekat, Alysia liked this post
  7. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,186
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    @Jim the Restless

    Welcome to the club! Iím nine years in following a similar disease onset. Fortunately, I was retired when the disease hit, so I didnít have a job situation to worry about.

    If you havenít done so already, please make an appointment at Cleveland Clinic. I see Dr Alexandra Villa Forte. Sheís great!!

    The good news is that youíll probably get better as you get the disease under control. I lead a pretty normal life now. Iíve been in remission since 2014. Iíve been off prednisone since 2018. My maintenance regimen is an annual dose of rituximab and bactrim 3x weekly.

    Keep us informed of your progress. 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

  8. Likes me2, annekat, Alysia liked this post
  9. #5
    Join Date
    Apr 2018
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Hi Jim,
    I was diagnosed about 2 1/2 years ago. Your symptoms where very similar as mine, I was very fortunate my primary care doctor put the pieces of my symptoms together early on and requested a ANCA blood test. I had hearing lost as well and wear hearing aids to help, I work in an office but I am a manager and in lots of meetings and need to hear everything being said. They are costly but help a lot. I agree with Andrew that you may want to ask your doc about increasing your Pred until treatment starts and starts taking effect. I was on 60 mg 6 months before they started reducing it, I am still taking 5 mg daily today. After my second treatment (still get every 6 months) of Rituxan I started feeling a lot better. Now i am pretty much feeling back to normally with the exception of permanent damage like my hearing loss.


    As far as your work and leave of absence, your company should allow your STD if you have a doctor's sign-off on it.

    Also, I honestly feel that a positive look out really helps the healing process.

    Take care and keep us posted. We are all here for you.

    Sandy

  10. Likes me2, drz, Alysia, annekat liked this post
  11. #6
    Join Date
    Mar 2019
    Posts
    6
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Hi Jim. A lot of your symptoms were similar to mine. I had intense headaches all the time that would not go away unless I was on prednisone. I was also going to the bathroom every 15 min but they suspected I wasn’t fully emptying my bladder. I also had extreme aches and pains in my joints as well as the sweating you talked about.

    My doctor has a theory that the GPA was affecting my pituitary gland which regulates a lot of your body’s different functions. Makes sense because my kidney doctor never figured what was wrong with my kidneys, just that they were not working properly. However, when we treated the GPA the kidneys got better as well.

    Have you had Rituxan or are they recommending it? It did wonders for me. It takes 4 weeks to take effect on your body but the morning I woke up on the 4 week I felt amazing.

    As far as your job goes you could look into disability or FMLA. I’m sure if different from state to state. I was unable to get FMLA due to not having worked enough hours, but I’m been told I can still sign up for it once I do have enough hours under my belt. I was able to get disability from the state so I suggest looking into that to help out with that unpaid time

    I’m not a doctor or a professional, these are just suggestions and things you can ask your doctor or HR about.

  12. Likes Alysia, annekat liked this post
  13. #7
    Join Date
    Jan 2020
    Location
    Cleveland, OH
    Posts
    2
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Thank you all for the welcome and the encouragement. Sometimes I feel like this has turned life upside down, but I really do recognize that I'm very lucky over all. The disease was caught early enough that it seems the damage was relatively low compared to many unfortunate folks who suffered for so long before a solid diagnosis. Plus I live in Cleveland where there are experts who are on the cutting edge of understanding this disease. Most importantly though is that I have an amazing wife who is my absolute bedrock in getting through all this. Anyone who has to go through this alone, and especially anyone who is a primary care provider to anyone else while living with this disease has my utter admiration. I don't know how you do it. Superhero level strength.

    I had my first visit with Dr. Villa Forte today at the Cleveland Clinic Vasculitis Center, and I couldn't be happier. I'm scheduled to have my first rituximab infusion in two days. I'm admittedly nervous about it, but I'm thinking positive and know that I have the support I need. I've had several rough days over the last couple weeks, but adjustments to the prednisone has leveled things off. Blood work today showed inflammation markers down from last week. I do have some signs of renal involvement, but kidney function is ok right now. Things are looking positive overall, and I'm ready to start moving forward.

    Plus I got some relieving news yesterday that my short term disability will be approved. They initially said they were going to decline it for reasons that made no sense at all. But after some emails, phone calls, and letters from the first rheumatologist I saw, things seem to have been ironed out. So that is a major stress relief. Long term, I have no idea how I'll feel in remission. I don't know if my new normal will be close to my old, so I might need to start looking for a new line of work. But I have time to figure that out now.

    Anyway, thank you all for giving me a place to share all this with people who understand.
    Last edited by Jim the Restless; 02-13-2020 at 03:20 PM.

  14. Likes me2, Masha, Geoff, shankxonline, Alysia, annekat liked this post
  15. #8
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,186
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Youíre in good hands with Dr Villa Forte.

    For me, remission has been pretty much a return to normal. Hope itís the same for you!!
    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

  16. Likes Dirty Don, me2, Alysia, annekat liked this post
  17. #9
    Join Date
    Oct 2017
    Posts
    134
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Not a diagnosis I expected

    Hi Jim,
    Sorry you got this diagnosis but I totally understand that there is also relief knowing what is wrong. I feel like GPA is a terrible disease but when itís under some sort of control you can lead a great life. I hope every day you start feeling better!

    Natty


    Sent from my iPhone using Tapatalk

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
  •