User Tag List

Likes Likes:  76
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 23

Thread: Newly diagnosed and scared

  1. #11
    Join Date
    Nov 2018
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Hi everyone,

    I wanted to give you a quick update. My shitty year keeps on giving me more to battle. When I was on vacation my house got burglarized and last week someone rear ended my husband and me while we were standing at a red light. It pushed us in the car in front of us. But you know what? We are fine and it is just stuff. Everything will be covered by the insurance and we now have a security system. Over the past weeks I learned to give any ďwhat ifĒ and bad thoughts a one way ticket back to where they came from. My body feels fine and most of the time my mind too. I have positive stress at work and besides the one day I got my echocardiogram and a panic attack, I only missed work for my infusions. I had my last infusion the Monday after Thanksgiving and havenít noticed any side effects yet. My blood and urin tests so far came back normal. Since Tuesday I am now on 50mg Imuran as maintenance medication. We will see next week how my body reacts to it, but so far no weird side effects. After testing we will go to 100mg if everything is fine. I am now down to 30mg prednisone and we will taper it down slowly to hopefully 0mg, but everything with time. I am also still taking the Mepron. Good news is that I am finally not vitamin D deficient anymore. It was really important to my Rheumy (and me) to get me out of it. So far the only thing that Wegenerís took from me is a little bit of hearing, but I can still manage without a hearing aid.

    I was following some people on Instagram who have Wegenerís, but I unfollowed most of them again as it I donít want to be reminded all the time. I only have two in my list, who actually also do some different content .

    I wanted to thank you all so much for your kind replies. I also got several private messages from people who are also doing fine with the disease. I wish you all good health, happy holidays and sooner or later theyíre will be a cure for all of us! Iíll gonna keep you posted from time to time, but as I said, I donít want to be reminded all the time. I take my meds, do my regular testing and keep on living my live.

  2. #12
    Join Date
    Nov 2018
    Location
    Nashville, TN USA
    Posts
    58
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Well, now itís 2019 (hard to believe- Belated Happy New Year everyone!) and I have become far more ill. Developed Malignant Hypertension (195/123) and couldnít get my Rituxan infusion last week. Had to see cardiologist who put me on Beta Blockers which have sent the BP down to normal. Still must get a CT Angiogram on Wednesday. Hopefully the Rituxan will be rescheduled soon. Have very severe polyneuropathy, CNS Vasculitis but kidney function appears to be normal. Thankfully my doctors are agreeing to treating me as an outpatient!

  3. #13
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Quote Originally Posted by [email protected] View Post
    Well, now it’s 2019 (hard to believe- Belated Happy New Year everyone!) and I have become far more ill. Developed Malignant Hypertension (195/123) and couldn’t get my Rituxan infusion last week. Had to see cardiologist who put me on Beta Blockers which have sent the BP down to normal. Still must get a CT Angiogram on Wednesday. Hopefully the Rituxan will be rescheduled soon. Have very severe polyneuropathy, CNS Vasculitis but kidney function appears to be normal. Thankfully my doctors are agreeing to treating me as an outpatient!
    Thank you for sharing. Sorry you became more sick. Why do they delay the rtx for so long ? Can pred help you in the meantime ?
    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. #14
    Join Date
    Nov 2018
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    I was surprised yesterday to have an email in my inbox that someone replied to my thread.
    Kwnorton: I am so sorry that you are currently doing not that well. I hope you will soon be able to get the Rtx infusion and be better again.

    I was yesterday at the Vasculitis Foundation conference in Seattle and I learned a lot. Also met some really nice people there. Also, tonight I got my ANCA test results back. I had sky high numbers when I got diagnosed 3 month ago and today they are negative. I know that they donít mean that much, but it made me smile.

  5. Likes Alysia, drz, annekat liked this post
  6. #15
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Quote Originally Posted by Yogasloth View Post

    Also, tonight I got my ANCA test results back. I had sky high numbers when I got diagnosed 3 month ago and today they are negative. I know that they don’t mean that much, but it made me smile.
    Anca results, for some of us, might mean A LOT: negative after high positive anca might mean a remission for you. High anca might mean wg activity. Negative anca won't necessary rule out wg activity.
    Last edited by Alysia; 01-14-2019 at 05:07 AM.
    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.

  7. Likes Masha, drz, annekat liked this post
  8. #16
    Join Date
    Nov 2018
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Alysia, you are right. For me this all is still new and my doctor told me not to focus too much on it. She told me itís more important to listen what the body says. Obviously i would love to use the ANCA results as an indicator, but I think in my case we need more data as I am just at the beginning of my journey. My body feels really good right now, but I am also still on 25mg of Prednisone. Next taper to 20mg is in 2 weeks.

  9. Likes Alysia liked this post
  10. #17
    Join Date
    Nov 2018
    Location
    Nashville, TN USA
    Posts
    58
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Thanks for the reply.
    Wish I could have attended the Vasculitis conference!
    To answer your question, the Rituxan got delayed due to bureaucracy. Also can no longer take Prednisone as it worsens my Malignant Hypertension and causes a host of other issues.
    Actually your ANCA numbers do mean something to me, as a patient who has had various lab tests all over the place since diagnosis. And pre-diagnosis, since I had symptoms for about 10 years before someone took it seriously enough.

  11. Likes Alysia, annekat liked this post
  12. #18
    Join Date
    Nov 2018
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    It makes me so angry when I hear that patients not get taken seriously. And it makes me even more angry when I hear you didnít get your infusion because of bureaucracy. It shouldnít be that way.
    I do feel really fortunate that for me everything went so fast and that I have a good team of caretakers.

    And of course, I hope no one of you got that wrong impression that I donít care about my ANCAs. I really do and as I said it made me happy this morning to see the result.

  13. Likes Masha, Alysia, Keith, annekat liked this post
  14. #19
    Join Date
    Nov 2018
    Location
    Nashville, TN USA
    Posts
    58
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Yes, it’s pretty upsetting to wait for Rituxan infusions until the relapse becomes so bad I have to face all of these drastic symptoms. I flew to California to see my Rhematologist on December 4 and it took until January 9th to schedule the infusion (which has now been postponed). I don’t know when my doctor’s going to phone the infusion center Pharmacist to
    OK it. This is all my fault for thinking we could live in Nashville where there is no good care for Vasculitis patients (at least who have it like myself and my son). Except for my cardiologist at Vanderbilt nobody there understands a thing. They won’t let us switch rheumatologists there! I wouldn’t submit myself to a hospitalization here if my life depended on it!

  15. Likes annekat liked this post
  16. #20
    Join Date
    Jul 2018
    Posts
    36
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly diagnosed and scared

    Back in November it looks like Vanderbilt opened a new vasculitis center. My apologies if you have already gone down this road, but even my cardiologist mentioned when he was at Vandy as a resident in the 90s they had a good rhematology department back then.

    http://news.vumc.org/2018/11/08/new-...itis-patients/

  17. Likes Alysia liked this post
Page 2 of 3 FirstFirst 123 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
  •