User Tag List

Likes Likes:  27
Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: GPA - New Symtoms

  1. #11
    Join Date
    Mar 2017
    Posts
    275
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    For my first visit to Cleveland Clinic, Dr. Villa Forte, I took copies of all my historic records from previous hospital visits. The good Doctor reviewed everything and had my biopsy tissues re-evaluated. She was the one that diagnosed this nasty disease that had confounded all the experts at a major teaching hospital.
    I continue to see her at least once a year while also being seen by local physicians.
    Cleveland Clinic rheumatology is phenomenal.

  2. Likes Pete, UncleD, drz, J@$0N liked this post
  3. #12
    Join Date
    Feb 2023
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Thank you everyone for the encouragement I find strength in your experience.

    It did end up looking like kidney involvement according to the discharge paperwork. I am on infusions now, and will see someone at Cleaveland Clinic, this week.

  4. Likes Pete, John S, Dirty Don, alan1107, drz liked this post
  5. #13
    Join Date
    Aug 2021
    Posts
    47
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    How do you determine a flare vs relapse and so on.. I've been having similar issues with joint pain from when mine started and uncertain of just wear and tear from getting older. How often do you have "flares" per-se? I have been in remission since November 2021, and can't figure out what would have caused a flare. My Rheumatologist said if i was really concerned about it, to come on in. Like you all, this becomes mentally exhausting. Appreciate this group and the discussions.

  6. #14
    Join Date
    Feb 2023
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Hi J@$on , for me in was the physical symptoms, and then confirmed by the
    lab tests. I just didnít feel normal. Symptoms were way outside my baseline and kept getting worse.

    The data showed everything indeed getting worse. I went from sinus to kidney
    quickly. This disease moves fast. Monitoring is a must from an experienced doctor.
    This forum and the peopleís responses helped me see that.


    Quote Originally Posted by J@$0N View Post
    How do you determine a flare vs relapse and so on.. I've been having similar issues with joint pain from when mine started and uncertain of just wear and tear from getting older. How often do you have "flares" per-se? I have been in remission since November 2021, and can't figure out what would have caused a flare. My Rheumatologist said if i was really concerned about it, to come on in. Like you all, this becomes mentally exhausting. Appreciate this group and the discussions.
    Last edited by UncleD; 03-03-2023 at 07:43 AM.

  7. Likes drz, Masha liked this post
  8. #15
    Join Date
    Aug 2021
    Posts
    47
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Did the symptoms progress quickly? I've been having joint and other pain, but it seems to ease up and not as persistent. Mine having started in my aorta gets me a little riled up from almost any pain. My Dr has been great and talked with me about it over the phone and told me to come in if i was still uncertain. Just hard to tell what to look for. I appreciate the replies... this is not something to face without input from others.

    Thank you,
    Jason

    Quote Originally Posted by UncleD View Post
    Hi J@$on , for me in was the physical symptoms, and then confirmed by the
    lab tests. I just didnít feel normal. Symptoms were way outside my baseline and kept getting worse.

  9. #16
    Join Date
    Feb 2023
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    I was diagnosed Fall 2021 as non-severe, meaning that disease localized in sinuses. Then in Early February 2023, major muscle pain, can't hardly walk, and blood in urine. ER visit showed a minor decline in kidney function, two weeks later tests showed I lost 50% kidney function. I would have been toast if I would have not pursued another doctor who took these signs serious. I am now a believer; this can turn on you fast! Blood work Lab monitoring is a MUST.

  10. Likes John S, J@$0N liked this post
  11. #17
    Join Date
    Aug 2021
    Posts
    47
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Were you treated in 2021? I have bloodwork every three months unless the dr and I feel it necessary to go sooner. I've just had similar pains that may stem from other issues. It is just really hard to tell. I think you are able to put a visual to what my Rheumatologist was saying when he said it would be unrelenting pain if I was having a flare up. I'm fortunate that he is always open to me coming in to see or get checked out. He has and has had a number of patients with Wegs over the years. Appreciate the feedback as this can become mentally draining at times. Did your CRP and Sed numbers jump in the initial onset of the flare? If you don't mind me asking, did anything occur that may have caused the flare? Surgery, injury, vaccination, etc.. ?



    Quote Originally Posted by UncleD View Post
    I was diagnosed Fall 2021 as non-severe, meaning that disease localized in sinuses. Then in Early February 2023, major muscle pain, can't hardly walk, and blood in urine. ER visit showed a minor decline in kidney function, two weeks later tests showed I lost 50% kidney function. I would have been toast if I would have not pursued another doctor who took these signs serious. I am now a believer; this can turn on you fast! Blood work Lab monitoring is a MUST.
    Last edited by J@$0N; 03-11-2023 at 04:24 AM.

  12. #18
    Join Date
    Feb 2023
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Quote Originally Posted by J@$0N View Post
    Were you treated in 2021? I have bloodwork every three months unless the dr and I feel it necessary to go sooner. I've just had similar pains that may stem from other issues. It is just really hard to tell. I think you are able to put a visual to what my Rheumatologist was saying when he said it would be unrelenting pain if I was having a flare up. I'm fortunate that he is always open to me coming in to see or get checked out. He has and has had a number of patients with Wegs over the years. Appreciate the feedback as this can become mentally draining at times. Did your CRP and Sed numbers jump in the initial onset of the flare? If you don't mind me asking, did anything occur that may have caused the flare? Surgery, injury, vaccination, etc.. ?
    Treated as soon as I was diagnosed in 2021, Methotrexate. Everything fine, until Fall of 2023. Nothing different, no stress, no change, nothing. Only thing that changed was the weather.

    Sinus flared up really bad, much worse than 2021, and tehn sed rate ramped up, and then kidney function dropped rapidly.

  13. Likes J@$0N liked this post
  14. #19
    Join Date
    Aug 2021
    Posts
    47
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: GPA - New Symtoms

    Just had an opportunity to go back through the thread. Rituxan is what I was put on right away... I hope you are seeing improvements.

    ``` Thank you for that.. I went to my PCP the other day for other issues and had him test my CRP and Sed and both were normal. I'm sorry you are going through this. What are they treating you with this time around?

    Quote Originally Posted by UncleD View Post
    Treated as soon as I was diagnosed in 2021, Methotrexate. Everything fine, until Fall of 2023. Nothing different, no stress, no change, nothing. Only thing that changed was the weather.

    Sinus flared up really bad, much worse than 2021, and tehn sed rate ramped up, and then kidney function dropped rapidly.
    Last edited by J@$0N; 03-14-2023 at 12:33 AM.

Page 2 of 2 FirstFirst 12

Tags for this Thread

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
  •