User Tag List

Likes Likes:  40
Page 2 of 2 FirstFirst 12
Results 11 to 17 of 17

Thread: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

  1. #11
    Join Date
    Jul 2019
    Posts
    26
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Our symptoms are very much alike, I started with what I and my NP thought was a sinus infection, a round of Zithromax seemed to help for the first couple of days, but I knew it was more than just sinuses. My right side of my face started going numb, swelling and redness to my rt eye, I contacted my NP requesting a cat scan, no response, a few more days went by and my joints started hurting, it was difficult to walk due to the pain. I contacted my NP again asking for pain medication, I specifically asked for a non-narcotic-the only response I rec'd was that she was referring me to neurologist (??) because of the numbness in my face and the swelling continued to get worse for 2 more weeks before I could get into neuro-he ordered a stat MRI and referred me to ophthalmology- all the time my symptoms were worsening, long story short- I had a mass in my rt inner orbit that caused the eye to protrude and stretched the optic nerve to the point that I have double vision in rt eye peripherally, I had a mass in my rt lung-needle biopsy. Both the mass in my eye and lung are due to GPA (vasculitis). I had 4 infusions of Retuximab, was off of work for 2 1/2 months on sick leave. I am still on Prednisone but weaning slowly, had a relapse so I had to start back up on the higher dose of Prednisone and in the process of weaning again. Scheduled to have another infusion of Retuximab in December. I am so frustrated with this, I do not have the energy I once had. No one really understands what we are all going through, it is very difficult to explain to others that I really can't look at you if you are standing to the right of me-the mass in my eye was 15mm, now down to 8mm, the vision is still double,they don't know if this will ever come back to single vision, can you imagine how driving is for me? The numbness on the rt side of the face is still there, still having sinus issues. The mass in my lung has shrunk to just a pea size image now. Everyone that comes into contact with us think we look "wonderful" but have no idea what we have to deal with on a daily basis. I am so glad you reached out to this group, they are very supportive and understand more than anyone, what we deal with daily. Sherry

  2. Likes shankxonline, Alysia liked this post
  3. #12
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,124
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Sorry to hear about your issues. Hope things improve for you. Your case exemplifies how GPA can cause bad things to happen quickly and affirms the need to get quick and appropriate care for any issues. Best wishes for better health.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. Likes shankxonline, sshiveley, Alysia liked this post
  5. #13
    Join Date
    Aug 2019
    Location
    CA, USA
    Posts
    18
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Quote Originally Posted by sshiveley View Post
    Our symptoms are very much alike, I started with what I and my NP thought was a sinus infection, a round of Zithromax seemed to help for the first couple of days, but I knew it was more than just sinuses. My right side of my face started going numb, swelling and redness to my rt eye, I contacted my NP requesting a cat scan, no response, a few more days went by and my joints started hurting, it was difficult to walk due to the pain. I contacted my NP again asking for pain medication, I specifically asked for a non-narcotic-the only response I rec'd was that she was referring me to neurologist (??) because of the numbness in my face and the swelling continued to get worse for 2 more weeks before I could get into neuro-he ordered a stat MRI and referred me to ophthalmology- all the time my symptoms were worsening, long story short- I had a mass in my rt inner orbit that caused the eye to protrude and stretched the optic nerve to the point that I have double vision in rt eye peripherally, I had a mass in my rt lung-needle biopsy. Both the mass in my eye and lung are due to GPA (vasculitis). I had 4 infusions of Retuximab, was off of work for 2 1/2 months on sick leave. I am still on Prednisone but weaning slowly, had a relapse so I had to start back up on the higher dose of Prednisone and in the process of weaning again. Scheduled to have another infusion of Retuximab in December. I am so frustrated with this, I do not have the energy I once had. No one really understands what we are all going through, it is very difficult to explain to others that I really can't look at you if you are standing to the right of me-the mass in my eye was 15mm, now down to 8mm, the vision is still double,they don't know if this will ever come back to single vision, can you imagine how driving is for me? The numbness on the rt side of the face is still there, still having sinus issues. The mass in my lung has shrunk to just a pea size image now. Everyone that comes into contact with us think we look "wonderful" but have no idea what we have to deal with on a daily basis. I am so glad you reached out to this group, they are very supportive and understand more than anyone, what we deal with daily. Sherry
    Thank you for sharing your story, sshiveley. Indeed these initial days are very tough without knowing what the disease will bring every day. I am running through a lot of tests just to get to the bottom of what all is affected and if its indeed GPA. Blood tests and CT scans have ruled kidneys and lungs as clear. Rheumatologist is now focusing on eyes, sinus and head MRI to see if there is trouble there. Still on Prednisone and no signs of moving to DMARDs yet until she has all results back. Hoping something shows a path, I get the right treatment and things can come under control as much as I can.

    Your story and positive attitude is an inspiration. Hope things get better for you. Do keep sharing your experiences.

  6. Likes Alysia, sshiveley liked this post
  7. #14
    Join Date
    Aug 2019
    Location
    CA, USA
    Posts
    18
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Quote Originally Posted by drz View Post
    Sorry to hear about your issues. Hope things improve for you. Your case exemplifies how GPA can cause bad things to happen quickly and affirms the need to get quick and appropriate care for any issues. Best wishes for better health.
    Thank you drz! Chasing the tests and various organs and meds for now.

  8. #15
    Join Date
    Jul 2019
    Posts
    11
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Welcome! I had similar symptoms especially with the eye pressure and bottom of feet pain where I could not even walk for a while. Also had lung infiltration's and shortness of breathe, extreme brain fog. Predisone helped me, then RTX and now I am diagnosed since Feb 2019 (sick since 10/18) I am going to have my 2nd dose of RTX at the end of the month. I am in San Diego and on my 3rd doctor. Have appt. at John Hopkins in November for another opinion on treatment
    .

  9. Likes shankxonline, Alysia liked this post
  10. #16
    Join Date
    Aug 2019
    Location
    CA, USA
    Posts
    18
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Quote Originally Posted by tac View Post
    Welcome! I had similar symptoms especially with the eye pressure and bottom of feet pain where I could not even walk for a while. Also had lung infiltration's and shortness of breathe, extreme brain fog. Predisone helped me, then RTX and now I am diagnosed since Feb 2019 (sick since 10/18) I am going to have my 2nd dose of RTX at the end of the month. I am in San Diego and on my 3rd doctor. Have appt. at John Hopkins in November for another opinion on treatment
    .
    @tac - thanks for sharing. We indeed share commonality of onset symptoms and I am worried about what follows. Everyone seem to have different experiences regards to where it flares. Curious - what was the deciding factor when the doctor diagnosed you with GPA with certainty?

  11. #17
    Join Date
    Aug 2019
    Location
    CA, USA
    Posts
    18
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Quote Originally Posted by tac View Post
    Welcome! I had similar symptoms especially with the eye pressure and bottom of feet pain where I could not even walk for a while. Also had lung infiltration's and shortness of breathe, extreme brain fog. Predisone helped me, then RTX and now I am diagnosed since Feb 2019 (sick since 10/18) I am going to have my 2nd dose of RTX at the end of the month. I am in San Diego and on my 3rd doctor. Have appt. at John Hopkins in November for another opinion on treatment
    .
    @tac - thanks for sharing. We indeed share commonality of onset symptoms and I am worried about what follows. Everyone seem to have different experiences regards to where it flares. Curious - what was the deciding factor when the doctor diagnosed you with GPA with certainty?

  12. Likes Alysia liked this post
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
  •