User Tag List

Likes Likes:  0
Page 9 of 11 FirstFirst ... 7891011 LastLast
Results 81 to 90 of 108

Thread: Me too - New GPA diagnosis. High Anca titer

  1. #81
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sending prayers for an easy procedure, speedy recovery & best results.
    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. #82
    Join Date
    Jan 2015
    Posts
    54
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    kidney biopsy was a piece of cake for me. Just some normal bleeding in urine for less than 24 hours but no tiredness or anything. mine done by cat scan imaging without any meds at all. You could feel a punch like pressure but didn't hurt.

  3. #83
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thx Aneinu!
    Biopsy went great. Hopefully will find out results next week.
    Feeling peaceful
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  4. #84
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Glad it went well. Hope the results are good. Re: the pred taper, most likely you will be asked to go from 40 to 30mg. That is only a 25% drop, where going from 60 to 40mg. was a 33% drop, which I'm sure you handled just fine despite what we said. I've never heard of anyone with Wegs going from 40 to 20mg. I could be wrong. But that would be a 50% drop. Generally, the lower you go, the less percentage the drop should be. From 30 to 20mg. would once again be a 33% drop. so maybe they would have you go from 30 to 25mg., which would be a 17% drop. then from 25 to 20mg. would be a 20% drop, so I'm not sure what would happen then. I think I am being way too analytical about this! I don't even remember how it all went with me. I just know that after 20mg. you have to really slow down and be careful, and even more so after 10mg. I am not a doctor, and I would encourage you to trust what your doctors say, though this might give you a little backup if you really think they are trying to make you go too fast. I'm not sure if Weggies are a little more sensitive to pred drops than anyone else, or if so, whether docs know it. A lot depends on how long you have been on it and whether your adrenal function has shut down and might have trouble starting up again. There are tests for adrenal function, though I don't think many of us have gotten them. Good luck!
    Anne, dx'ed April 2011

  5. #85
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    @annekat Wow! Thank you for all that good info Anne! I appreciate it! I feel more prepared now when next taper happens. Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  6. #86
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    So I got great news yesterday - my kidney biopsy shows the mass is a benign angiomyolipoma. Just as the dr had predicted all along. The next step is an embolization but he thinks the chance of it bleeding or causing any concerns in the next year is in the "single digit range" - still I know that I want to get rid of it because if it did bleed it could be a life-threatening situation. It's 7 cm x 5 cm x 4.7 cm size and the protocol is to remove or embolize anything above 3 cm in size. He said it can't be surgicially removed because it is right in the center of my kidney and I'd likely lose the whole kidney if they tried surgery. But I have concerns about embolization too since that means going at it through my blood vessels and I know vasculitis can make blood vessels inflamed and more fragile. So my next step is to meet w/ the interventional radiation doc to get more info about embolization of a vasculitis patient.

    The other good news is that my chest Ct scan came back looking great according to the pulmonary dr. What I don't understand though is why I still feel shortness of breath. I'm wondering if it could be airway stenosis. My voice is slightly off. I understand shortness of breath could be from the prednisone too. But the dr didn't think the shortness of breath was from the granulomas themselves as they have continued to considerably shrink. She said there are only 2 visible on the Ct scan now. My oxygen was 92-95 during the kidney biopsy last week. So I'm glad my ct scan looks great but i'd love to not feel short of breath. Exertion makes it worse.

    Also - The reality of this disease has set in as the 'novelty' of having a rare disease has worn off. It's been bringing me down the last few days when I think about all the organ systems that are involved or could become involved. All the things I have to learn about and make complicated decisions about and feel poorly from... breathing issues, eye site decline, and the last week my hearing is a bit off again with a strange sensation in my ears. It may be that I'm fighting a cold, or could it be that my prednisone taper has set it off. I'm hungry all the time, eating a lot, gaining weight and feeling sorry for myself. I could go on complaining but I know I'm preaching to the choir. I also know that I have it pretty good compared to many on this forum who suffer from so much more than me. It's can be kind of depressing and anxiety producing to have this disease. I read about all the symptoms you all have and wonder will that happen to me? As pathetic as it sounds, at first there was a bit of excitement and feelings of uniqueness mixed in with the fear... but now I'd just prefer to not have it. Can I take it off now, like a coat? wouldn't that be nice. I'm grieving my pre-weg life.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  7. #87
    Join Date
    Nov 2015
    Posts
    186
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Gab122 View Post
    So I got great news yesterday - my kidney biopsy shows the mass is a benign angiomyolipoma. Just as the dr had predicted all along. The next step is an embolization but he thinks the chance of it bleeding or causing any concerns in the next year is in the "single digit range" - still I know that I want to get rid of it because if it did bleed it could be a life-threatening situation. It's 7 cm x 5 cm x 4.7 cm size and the protocol is to remove or embolize anything above 3 cm in size. He said it can't be surgicially removed because it is right in the center of my kidney and I'd likely lose the whole kidney if they tried surgery. But I have concerns about embolization too since that means going at it through my blood vessels and I know vasculitis can make blood vessels inflamed and more fragile. So my next step is to meet w/ the interventional radiation doc to get more info about embolization of a vasculitis patient.

    The other good news is that my chest Ct scan came back looking great according to the pulmonary dr. What I don't understand though is why I still feel shortness of breath. I'm wondering if it could be airway stenosis. My voice is slightly off. I understand shortness of breath could be from the prednisone too. But the dr didn't think the shortness of breath was from the granulomas themselves as they have continued to considerably shrink. She said there are only 2 visible on the Ct scan now. My oxygen was 92-95 during the kidney biopsy last week. So I'm glad my ct scan looks great but i'd love to not feel short of breath. Exertion makes it worse.

    Also - The reality of this disease has set in as the 'novelty' of having a rare disease has worn off. It's been bringing me down the last few days when I think about all the organ systems that are involved or could become involved. All the things I have to learn about and make complicated decisions about and feel poorly from... breathing issues, eye site decline, and the last week my hearing is a bit off again with a strange sensation in my ears. It may be that I'm fighting a cold, or could it be that my prednisone taper has set it off. I'm hungry all the time, eating a lot, gaining weight and feeling sorry for myself. I could go on complaining but I know I'm preaching to the choir. I also know that I have it pretty good compared to many on this forum who suffer from so much more than me. It's can be kind of depressing and anxiety producing to have this disease. I read about all the symptoms you all have and wonder will that happen to me? As pathetic as it sounds, at first there was a bit of excitement and feelings of uniqueness mixed in with the fear... but now I'd just prefer to not have it. Can I take it off now, like a coat? wouldn't that be nice. I'm grieving my pre-weg life.
    Thank you for all that good news.
    It should only continue.
    Sorry that you're feeling down.
    It is well understood.
    Stay strong.

    Sent from my SM-G920V using Tapatalk

  8. #88
    Join Date
    Sep 2016
    Location
    Columbia, MO
    Posts
    37
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Gab122 -

    Glad for the good news.

    And might I add that I share your feelings about longing for the Pre-WEGs life. I feel very lucky to have been diagnosed early. My symptoms were so light compared with what I see in the forum. I want to know what I'm dealing with, but at the same time I am afraid to think what might happen in the coming years.

    Since you and I were diagnosed around the same time I wonder if we are not just processing our grief over our lost health. I just wanted you to know that I hear you. I get it. I hope you continue to get good news. You deserve it.

    -Becky

  9. #89
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Gab, I think you are still on enough pred that the puffiness is to be expected. You will likely start looking more like yourself at around 15-20mg., though that is just a guess, because everyone is a little different. Hang in there!😊

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  10. #90
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by blm View Post
    Gab122 -

    Glad for the good news.

    And might I add that I share your feelings about longing for the Pre-WEGs life. I feel very lucky to have been diagnosed early. My symptoms were so light compared with what I see in the forum. I want to know what I'm dealing with, but at the same time I am afraid to think what might happen in the coming years.

    Since you and I were diagnosed around the same time I wonder if we are not just processing our grief over our lost health. I just wanted you to know that I hear you. I get it. I hope you continue to get good news. You deserve it.

    -Becky
    Thanks Becky, yes I am sad. It all just sort of hit me this past week. Maybe too busy with the whirlwind of appts before for it to sink in. Sad is the exact right word for how I feel about having this disease. I'm sure it's a stage of grief and I'm sure I'll feel better as I progress on.... I have a few symptoms and I don't know if it's because the pred is lowered or cuz I have a head cold, but my ears feel funny/weird and my nose has never really stopped running but it's running more now and even tho my lungs look good, just walking leaves me short of breath and I wonder if it's actually airway stenosis. My eyesight continues to diminish tho I know that might be the prednisone. My A1c count is up making me pre diabetic (no doubt largely due to prednisone) I have to make decisions about my Angiomyolipoma and the list goes on. It's all just lousy. As you all know. And the reality of it is just sinking in.

    Becky we'll be Weg GPA buddies traveling the road with the same start date.... Hugs.

    Thank you Anne for your encouraging words, I know it's partly retained water weight in my face esp. But I don't like how I look. It's just a little thing that I Shd not mind. But the little things add up. Makes me want to get off pred quicker but I know that's not a great idea for other reasons. Someday it'll be my old face.... In the mean time I'll try to eat less salt and eat healthier and realize it's a stage. I think I'll get a haircut too. Was thinking of growing it out but I like the first "do" better. That might help me feel better.

    Gab
    Last edited by Gab122; 10-01-2016 at 08:36 AM. Reason: Added thought

Page 9 of 11 FirstFirst ... 7891011 LastLast

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
  •