User Tag List

Likes Likes:  126
Page 6 of 9 FirstFirst ... 45678 ... LastLast
Results 51 to 60 of 87

Thread: Confirmed Diagnosis

  1. #51
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default



    In late February I gave up playing fretted instruments like guitar and ukulele because my hands were covered in Granuloma Annulare sores. Rituximab cleared them up quickly and I've been playing again since July.

  2. Likes Pete, LisaT, Alysia, mishb, Arleta, elephant, Keith, CaraJ liked this post
  3. #52
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by John S View Post


    In late February I gave up playing fretted instruments like guitar and ukulele because my hands were covered in Granuloma Annulare sores. Rituximab cleared them up quickly and I've been playing again since July.
    Wonderful Thanks for sharing John. I am so glad you can play again. Keep on playing
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. Likes John S liked this post
  5. #53
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    You have a great rheumatologist and she will give you the right treatment.

  6. #54
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    My sister sent me this video. This is not me:

    https://facebook.com/HotSpringsBroad...3992779549499/

  7. Likes Pete, drz, Keith liked this post
  8. #55
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by John S View Post
    My sister sent me this video. This is not me:

    https://facebook.com/HotSpringsBroad...3992779549499/
    Good video about GPA and how it can affect one.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. Likes Alysia liked this post
  10. #56
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    My infusion of Rituximab was in May. I believe I am experiencing a flare right now. Flare is such an appropriate word for this. A week ago, I started getting the headaches again and the nasal flush started bringing up the hunks again. I'm already feeling miserable. The headaches have increased in intensity and frequency, the crusts are building faster, I'm feeling exhausted, it feels like something is chewing on the back of my eye again and the sores are starting to appear on my hands.
    I put a message into Dr. Villa-Forte and now am waiting to hear back from her.

  11. #57
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by John S View Post
    My infusion of Rituximab was in May. I believe I am experiencing a flare right now. Flare is such an appropriate word for this. A week ago, I started getting the headaches again and the nasal flush started bringing up the hunks again. I'm already feeling miserable. The headaches have increased in intensity and frequency, the crusts are building faster, I'm feeling exhausted, it feels like something is chewing on the back of my eye again and the sores are starting to appear on my hands.
    I put a message into Dr. Villa-Forte and now am waiting to hear back from her.
    Sounds like the beginning of a flare. I am sorry. The rtx works like a shape of normal curve which lasts about 6 months. At the edges of the curve, wg is more active. You are around the 6th month. So I guess its time for the next treatment. I am glad that you have a good dr.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  12. Likes LisaT liked this post
  13. #58
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Confirmed Diagnosis

    I had a Rituximab treatment in October and another in early November. The symptoms are now under arrest. I do feel kind of run down and my eyes never seem as good as they were in pre-disease days. I suspect that these might be permanent conditions now. I'm adapting my behaviors to the conditions as they exist. I'm trying to enjoy every day to the max.
    We took 2 grand-children, ages 4 and 11, to Disney World. I rented a handicapped scooter and it was wonderful.

  14. Likes Pete, elephant, Keith, Alysia, mishb, Jaha liked this post
  15. #59
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Confirmed Diagnosis

    My last RTX treatment was early November. The Dr. had me increase Prednisone to 30 mg. I have been tapering rapidly and am down to 6 mg now. About two weeks ago I got a rash around y armpits which has now spread to my elbows. At first I thought this might be due to the drop in humidity (Illinois heating season) or change of laundry detergent. I se that GPA sometimes has rashes associated with it and that RTX sometimes has rashes as a side effect. I couldn't get an appointment with a Dermatologist till late Feb. so right now I'm applying cortisone cream.
    Could the rash be due to the rapid tapering?

  16. Likes Aneinu liked this post
  17. #60
    Join Date
    Nov 2015
    Posts
    186
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Confirmed Diagnosis

    Quote Originally Posted by John S View Post
    My last RTX treatment was early November. The Dr. had me increase Prednisone to 30 mg. I have been tapering rapidly and am down to 6 mg now. About two weeks ago I got a rash around y armpits which has now spread to my elbows. At first I thought this might be due to the drop in humidity (Illinois heating season) or change of laundry detergent. I se that GPA sometimes has rashes associated with it and that RTX sometimes has rashes as a side effect. I couldn't get an appointment with a Dermatologist till late Feb. so right now I'm applying cortisone cream.
    Could the rash be due to the rapid tapering?
    We have found that rashes can be associated with weg flare up. It also may be a delayed reaction to the rtx. The doctors were not able to confirm by us.

    Wishing and hoping that you feel better.

    Sent from my SM-G920V using Tapatalk

  18. Likes Alysia liked this post
Page 6 of 9 FirstFirst ... 45678 ... 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
  •