User Tag List

Likes Likes:  38
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 27

Thread: Newly Diagnosed

  1. #11
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    76
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Quote Originally Posted by sshiveley View Post
    The rheumatoidologist specializes in GPA, I really donít think I am in remission either, donít feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I donít blow my septum, canít afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry
    Dear Sherry,

    Sorry you are also going through this.

    I'm about to complete my second year with this and I managed to figure out a few things about how this disease and the treatment interact with each other, which I will share soon. I'm almost in remission and no longer afraid of relapsing. Currently using Mtx weekly and a little Prednisone daily.

    Right now, I think a good option for you is to contact HR to determine if you have a short-term disability coverage, and if so, you may want to use it. Your health is of utmost importance, and managing this illness is very difficult and challenging.

    In the long term, as you know, the treatment is immunosupression, possibly for the rest of your life. In your line of work, you're exposed to all sorts of pathogens. Our risk of suffering complications of opportunistic, contagious diseases is dangerously high.
    Ed.
    (I'll follow up later)
    Last edited by seied; 07-23-2019 at 02:29 PM.

  2. Likes Masha liked this post
  3. #12
    Join Date
    Jul 2019
    Posts
    19
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    I did check into disability at work, they only provide 60%, not enough sadly. Sherry

  4. #13
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,885
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Sherry,
    I usually mention, but forgot to, that our archives may be searched, going back to the beginning of the forum, on any WG/GPA related subject you can think of. Just look for the word SEARCH on the Lobby page. This affects everyone differently, and some info in the archives may be out of date, especially in terms of available treatments. But it really helps to get an overview by reading what many others have been through. The other thing that helps a lot is actually observing your own experience with how things are going and eventually seeing patterns that you recognize. For example, you mentioned that when tapering your pred dose, your joints started to hurt. Eventually you will be able to read those signs on a day to day basis so that you will, in some ways, know more than your doctor about what is going on with your body, and be able to help him or her decide on the next course of action. It is a journey that will become more comfortable and familiar over time. Someday you will realize that you feel much better, and will find yourself confidently answering questions asked by newcomers here, and giving them encouragement. Once again, I ask myself, where would we be without the internet and the forum?

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

  5. Likes drz, Masha, seied, Dirty Don liked this post
  6. #14
    Join Date
    Jul 2019
    Posts
    19
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Thank you so much for your post, I am trying
    here, just trying to grasp all of this. I am so blessed to find this site.

  7. Likes seied liked this post
  8. #15
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    76
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Quote Originally Posted by annekat View Post
    The other thing that helps a lot is actually observing your own experience with how things are going and eventually seeing patterns that you recognize. For example, you mentioned that when tapering your pred dose, your joints started to hurt. Eventually you will be able to read those signs on a day to day basis so that you will, in some ways, know more than your doctor about what is going on with your body, and be able to help him or her decide on the next course of action. It is a journey that will become more comfortable and familiar over time.
    So true!
    I keep Prednisone in 1mg, 5mg and 10mg pills.
    I adjust my dose on a daily basis, currently I'm at 3.5mg/day.
    If you find that continuing to taper causes symptoms to reappear, then this rate may be too fast.

  9. #16
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,885
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Quote Originally Posted by seied View Post
    So true!
    I keep Prednisone in 1mg, 5mg and 10mg pills.
    I adjust my dose on a daily basis, currently I'm at 3.5mg/day.
    If you find that continuing to taper causes symptoms to reappear, then this rate may be too fast.
    My doctor has been resistant, for some reason, to prescribe me those different denominations of pred pills. So I just have 5mg pills and have to split one of two, to get a 7.5mg dose. Yet he doesn't seem to mind if I take it upon myself to change the dosage. Alternating is another way to taper without further splitting of pills. I tried alternating 7.5mg with 5mg over each two days, so the dose worked out to 6.25mg. I had a little trouble, not with sore joints, but with night sweats and fatigue. So I went back to 7.5mg.This summer my rheumy and my pulmonologist agreed, since I have allergies to grass and other pollens, that I should stay at 7.5mg. But I'm anxious to try that taper again and get it down to 5mg/day. I think when I get to 5mg/day and lower, my doc will prescribe the 1mg pills. Or I could alternate 5mg with 2.5mg for starters, averaging out to 3.5mg/day. But I just get tired of splitting pills!

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

  10. #17
    Join Date
    Jul 2019
    Posts
    19
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Thank you!

  11. #18
    Join Date
    Jul 2019
    Posts
    19
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    I am not comfortable with changing my doses yet, staying on 15 until I see the Dr. again but I have seen here on this site that many people do this, just don’t trust myself yet to play with the doses. I hope to be able to stop taking Prednisone all together but afraid that won’t be the case. ��

  12. Likes annekat liked this post
  13. #19
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,885
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    I think you are smart not to change doses at this point, and your doctor might not like it. I've been at this for 8 years and think I was left on most of my meds for too long. That gave me plenty of time to get comfortable with changing prednisone doses. I wouldn't do it with any of my other major meds. Although I have a light case compared to some, it's taking a long time for anyone to think I'm ready to come off the meds. You have gotten down a lot lower on your prednisone than I did in that amount of time. I did not take Rituxin because it was just being approved for WG/GPA. So I took cyclophosphamide (Cytoxan), a very effective drug, but somewhat risky long term, and now I've been on methotrexate around 7 years. I've only had a couple of mild to moderate flares and only one cold, but also had shingles last year, which can be linked to taking an immunosuppressant. Other issues have been bone and tissue damage in ears, sinuses, and lungs, vertigo, double vision, and anemia. I have permanent hearing loss and a saddle nose, and cannot smell. A lot of the damage could have been avoided with an earlier diagnosis. It was 2.5 years too late. But I'm thankful I have no kidney damage so far, and realize I'm doing a lot better than some.

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

  14. #20
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    76
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Newly Diagnosed

    Quote Originally Posted by annekat View Post
    My doctor has been resistant, for some reason, to prescribe me those different denominations of pred pills.
    Then next time ask him to prescribe your Prednisone using the 2.5mg instead of 5mg pills.

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
  •