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Thread: Confirmed Diagnosis

  1. #61
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    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?
    Yes. Rash can be the result of too fast tapering. Do you have rash as wg symptom ?
    I have, for example, ears or joints pains as wg flare symptoms, and I can get them if I taper the pred too fast after being on higher dozes. Try to go back to the doze you were on before the rash started and see if it helps.
    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.

  2. #62
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    Default Re: Confirmed Diagnosis

    Today marks 14 days without Prednisone. I'm not on a diet but my appetite has decreased. I've lost 5 pounds so far.

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  4. #63
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    Default Re: Confirmed Diagnosis

    My next Rituximab infusion will be May 15. Symptoms started reappearing about a week or two ago. At first , they were sporadic and I wasn't sure they were connected to GPA. Now I can count on them showing up every day. Headaches have been creeping in, along with eye aches, hand weakness and overall malaise. Think I'll call on Monday and ask if they can move up my appointment.

  5. #64
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    Default Re: Confirmed Diagnosis

    Quote Originally Posted by John S View Post
    My next Rituximab infusion will be May 15. Symptoms started reappearing about a week or two ago. At first , they were sporadic and I wasn't sure they were connected to GPA. Now I can count on them showing up every day. Headaches have been creeping in, along with eye aches, hand weakness and overall malaise. Think I'll call on Monday and ask if they can move up my appointment.
    I hope the next treatment helps get you back into a better remission. Those mild symptoms can be stressful since you can't be sure what they indicate and mean for your future.
    Knowledge is power! Wisdom is using it to make good decisions!

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  7. #65
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    Default Re: Confirmed Diagnosis

    Since January, my skin has been itching like crazy. It seems to get worse every day. I thought that it was just the dry Winter air and low humidity but now I'm not so sure. Is there any correlation with GPA, TTX or Pred?

  8. #66
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    Default Re: Confirmed Diagnosis

    Quote Originally Posted by John S View Post
    Since January, my skin has been itching like crazy. It seems to get worse every day. I thought that it was just the dry Winter air and low humidity but now I'm not so sure. Is there any correlation with GPA, TTX or Pred?
    Might be wg related although not typical. Might be not wg related. Do you have other wg symptoms ?

    I think that I can say that in most cases when wg is active there will be few symptoms which are wg related and not only one. Although I also saw cases where only one symptom indicated wg activity.
    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.

  9. #67
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    Default Re: Confirmed Diagnosis

    This morning I had a 4 inch nasal crust. First one I had since my last RTX treatment in November. Regular headaches have returned, eye aches, hand aches and general tiredness.
    All this along with a crazy itchiness.

  10. #68
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    Default Re: Confirmed Diagnosis

    Quote Originally Posted by John S View Post
    This morning I had a 4 inch nasal crust. First one I had since my last RTX treatment in November. Regular headaches have returned, eye aches, hand aches and general tiredness.
    All this along with a crazy itchiness.
    Sounds like the wg beast is trying to raise its head. It is also almost 6 months since your last rtx. For me when the 6 months are coming to an end, I have more wg symptoms.
    When are you going to get your next rtx ? Are you on maintenance med ?
    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.

  11. #69
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    Default Re: Confirmed Diagnosis

    I'd had various symptoms for a year or two. During the months before my diagnosis, I started have a lot of breathing issues and chest pain. My lungs and kidneys were involved. I've weaned down from 100 mg to 50 mg of pred after my discharge from the hospital after a 7 day stay. I've completed 2 infusions of RTX. Feel better but dealing with the side effects of the steroids. Moonface, jacked up sugar and BP. The latter two somewhat under control but my face is the size of Texas! I'll take it if it's the road to remission though!

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  13. #70
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    Default Re: Confirmed Diagnosis

    In December of 2015 my Step-daughter, Jennifer https://www.drjenniferkessmann.com/ , a Functional Medicine Doctor from Southlake, TX, came to visit for Christmas. I had an unknown illness that Doctors were just guessing at. They sent me home for the Holidays and I was spending all of my time in bed, with the lights off. Headaches were excruciating, and any kind of light hurt my eyes. My right eye was swolem to the point that it nearly touched my glasses.
    Jennifer took one look at me and ordered that we call 911 to get to the hospital. She didn't have any idea what was wrong with me but she probably saved my life. The local hospital never came up with a diagnosis so they sent me to Loyola in Chicago. Loyola ran multiple tests and got me on a steady diet of Prednisone.
    After a few months, Jennifer sugested that I go to Cleveland Clinic. In Cleveland, I met Dr. Villa Forte who diagnosed the Wegs and me on a recovery course.
    Now that I have been in recovery for a few years, I am trying to lose weight and get my health in order. I've lost 40 pounds, so I'm at the weight I was Christmas 2015. I'm trying to get off insulin and blood pressure medication. My step-daughter can not treat me, her office is in Dallas, but I do ask her advice and she always is spot on.
    This Christmas, I pray that I won't be in the hospital. I'm feeling better than I have in 10 years and I think I'll feel even better in the coming year. I hope to lose another 60 pounds to finally get rid of my "Quit smoking weight".

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