User Tag List

Likes Likes:  10
Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Trying to figure it all out.

  1. #1
    Join Date
    Dec 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Trying to figure it all out.

    Greetings!

    39 year old male here. Diagnosed with Autoimmune Hepatitis about two years ago. Was on prednisone and azathioprine last year to get things under control. Stopped prednisone earlier this year, continuing the azathioprine (175mg) for disease maintenance.

    Shortly after stopping the prednisone, I had some new symptoms emerging and started back down the “what the hell’s wrong with me?” road.

    At first my docs were thinking RA (joint pain, fatigue, elevated RF, etc.). After further testing (clean x-rays, RF back to normal), my rheumy was unconvinced that it was RA and sent me to a neurologist. By this time, I was was having mild dizzy spells/balance issues, having some numbness/tinging in my hands and feet, burning sensations in my left leg and left side of neck, minor cognitive issues, spasticity, random pain all over my body, ED, chest discomfort and weird occasional shortness of breath.


    Brain MRI showed a few small lesions “consistent with a demyelinating disease like MS”. My neuro ordered lumbar puncture and spinal MRIs along with about 30 different blood tests. CSF showed elevated proteins indicating inflammation but no other markers for MS. To my knowledge, there were no lesions detected on my spinal MRIs (I see neuro in a couple days).


    One of the blood tests was an ANCA panel, which showed elevated PR3 (4.6) and an atypical pANCA titer >1:640. C-ANCA was "indeterminate" (P-ANCA and MPO were both negative). At this point, my neuro sends me back to my rheumy, but turns out he's out on medical leave until June, so I get a new referral to a new rheumy who, because of the positive ANCA, gets me in the next day. (I was also born with only one functioning kidney).

    Based on my presentation, my rheumy put me back on a prednisone taper and started me on 400 mg of Plaquenil. He tells me the high atypical pANCA titer is likely from my autoimmune liver disease, and went ahead and ordered another ANCA panel as well as some kidney function tests.

    Results of kidney function test came back normal. PR3 is now 4.9 and my C-ANCA is positive at 1:160. I know these numbers aren't crazy high or anything.

    Fortunately, I've been taking a managing dose of azathioprine for almost two years, so I've been keeping whatever is going on "at bay" for the time being. Not to mention the 10 or so months of prednisone last year. At the same time though, I feel like my presentation might be a little atypical, because I'm already partially treating whatever is going on.

    I'm waiting to hear back from my rheumy to get his thoughts on the results, but I stumbled upon this forum in my research and thought I'd share my story up to this point. Maybe get some of your opinions on the matter. I keep reading that a positive C-ANCA and PR3 are highly specific to Wegener's. I've also read that Wegener's can have some central nervous system involvement, which might explain the elevated proteins detected in lumbar puncture as well as the neurology related symptoms.

    Any thoughts based on your experiences? Any advice on handling my follow-up appointments? Questions to ask, things to remember, etc.

    I love that this forum exists! Thanks for taking the time to read!
    Last edited by robertlevigarrett; 12-09-2019 at 12:58 PM.

  2. Likes me2, Keith liked this post
  3. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,171
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    @robertlevigarrett

    At the moment, all I can do is welcome you to the club and hope your docs get your symptoms matched to a condition and treat it.

    My wife was diagnosed with autoimmune hepatitis this past July. Sheís taking azathioprine and is almost off prednisone. She still has difficulty getting onto a ďproperĒ sleep schedule and doesnít have much energy. Hoping that improves over the next few months. She sees hepatology for a follow up tomorrow.

    Iím 9 years in on GPA. Only getting an annual dose of rituximab for disease control.

    Itís an interesting scenario with both of us having an incurable but treatable autoimmune disease.
    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

  4. Likes robertlevigarrett, Keith liked this post
  5. #3
    Join Date
    Dec 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    Hey Pete--

    Thanks for the reply. I hope so too! It's been a frustrating year. Just as I was becoming "okay" with the autoimmune hepatitis, this other stuff started popping up.

    It is an interesting scenario, indeed. Especially with GPA and AIH being so rare. At my first appointment with my new rheumy, he actually told me if this ends up being Wegener's that I should start playing the lottery!

    FYI, I'm in Ohio, too. Greenville. It's about 45 min northwest of Dayton, near the Indiana state line.

  6. #4
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,171
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    Hi Robert!!

    Have you considered going to Cleveland Clinic for evaluation? Iíve been going there since 2012.
    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

  7. #5
    Join Date
    Dec 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    I have considered it. This ANCA positivity stuff is a pretty recent development.

    Most of my specialists are down in Cincinnati at UC Health. I know that the Clinic is second to none in this field, but Vasculitis is supposedly a specialty of my new rheum. Iíd like to follow up with him first, see what he says, then go from there.

  8. #6
    Join Date
    Dec 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    Just heard back from my rheum and he doesnít seem to think itís vasculitis at all. Doesnít want to do any further testing to eliminate either.

    Iím not comfortable with that considering the C-ANCA/PR3 positivity. Calling Cleveland Clinic to see about getting in for an evaluation.

    Am I missing something? Am I misunderstanding the high specificity of these positive ANCA results? I know you canít diagnose off of the results alone, but I would really like to do a few more tests before ruling it out completely.
    Last edited by robertlevigarrett; 12-10-2019 at 06:06 AM.

  9. #7
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,171
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    At Cleveland Clinic, the top two in vasculitis are Alexandra Villa Forte MD MPH (I see her - great doc) and Carol Langford MD (Department Head).
    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

  10. Likes Keith liked this post
  11. #8
    Join Date
    Jul 2019
    Posts
    29
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    You mentioned UC in Cincinnati, have you considered OSU in Columbus? Dr. Alexandria Meara is my rheum.

  12. #9
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,171
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    Quote Originally Posted by sshiveley View Post
    You mentioned UC in Cincinnati, have you considered OSU in Columbus? Dr. Alexandria Meara is my rheum.
    Iím not aware of any vasculitis specialists at Cincinnati (That doesnít mean much, btw). I was diagnosed at Ohio State, but they didnít have as much experience with vasculitis as Cleveland Clinic. I was on cytoxan much too long. They tried me on immuran (without doing a TMPT test), and it damn near killed me. I found this forum and then Cleveland Clinic while I was recovering from that episode.
    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

  13. Likes Masha liked this post
  14. #10
    Join Date
    Dec 2019
    Posts
    5
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Trying to figure it all out.

    So, I'm in with Dr. Alexandra Villa Forte next week. Really happy about that.

    I was really in a funk yesterday, trying to figure out why my rheum was so quick to brush off the possibility of vasculitis. I was questioning myself all day, wondering if I was blowing things out of proportion. Luckily, I had my follow-up appt. today with my neuro who ordered the first ANCA test (and referred me to my rheum). He shared every single one of my concerns and thinks going to Cleveland Clinic is a great idea. He even ordered a couple more CNS/vasculitis related tests.

  15. Likes Masha, Pete, Keith, drz liked this post
Page 1 of 2 12 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
  •