User Tag List

Likes Likes:  0
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 24

Thread: (Finally) Some Great News

  1. #11
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sangye,It's so good to hear from you,it's been awhile and what great news !!! I'm so happy for you that "you" finally confinced someone what the problem was and everything is going good.What a difference this will make in your life.Will you still be taking any maintence drugs ? Don't stay away so long
    Life isn't about how you survive the storm, but how to dance in the rain !

  2. #12
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm so incredibly happy to hear this, Sangye! What great news! Like everyone has said, I hope you continue to improve and feel better... and get that energy back soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  3. #13
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    The Wegs situation is the same for me-- as soon as the rtx barely wears off it becomes very active again. We've been experimenting with different treatment schedules since last year. The annual month-long rtx treatments were flattening me for 9 weeks, and I was in bad shape for months while the rtx gradually wore off. Since March we've been doing a single rtx infusion every 4 months and it's working well.

    Dr Seo said recent research has shown that a single infusion every 6 months is very effective at keeping most people in remission. Six months is a bit too long for me to go, but 4 months seems to be just right.

  4. #14
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post

    Phil, I'm thrilled that you're almost off pred. I didn't think that'd be possible for you-- thought you needed it to control the Wegs. Hot diggety, man. I don't really have any increase in energy yet but we'll see.
    Actually I have never really needed the pred to keep the Wegs at bey. I flared in late 2007 and again in 2009. Then in 2009 and 2010 I had major sinus and lung infections that warranted an increase in pred as well. Each time I thought I might get off, something else came up so I needed to up the pred. Then I flared in 2011 and had more lung infections in 2011 and 2012 then I flared in 2013. And for most people pred is not used to keep the Wegs at bey anyway. There is no sound evidence that pred keeps Wegs at bey alone. If I have a flare again I will not go on the pred, I will just have 500mg solumedrol along with the rtx infusions. And speaking of rtx, I am also getting it 1g infusion every 4 months.
    Phil Berggren, dx 2003

  5. #15
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I should have been more specific. I didn't mean low dose pred would keep Wegs in remission, but for many people it is necessary to keep their symptoms under control and make life livable. Dr Seo told me people with a lot of sinus involvement have the most trouble being lower than 10 mg pred. As we know, even if you're in remission you can still have significant symptoms that require pred. Fortunately that wasn't the case with me.

  6. #16
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Sangye.
    congratulations. great news.
    thank you for sharing this important info with us.
    in fact, all this "adrenals issue" is new for me.
    none of my docs ever mentioned anything about it. (I think Im the only weggie they ever saw)
    does it mean that as long as Im on pred, it is better to check the functionning of the adrenals ?
    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. #17
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Alysia, as long as you're on pred you can't check adrenal function. Pred stays in the body too long and interferes with the testing. Hydrocortisone is dosed differently (one dose in the morning, one in the afternoon). To do the test while on HC you don't take the afternoon dose or the testing day's morning dose, and then you do the lab test early in the morning.

    Have your doctors told you what to do if you have an accident, surgery, severe stress, etc while on pred? It's very important

  8. #18
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    I should have been more specific. I didn't mean low dose pred would keep Wegs in remission, but for many people it is necessary to keep their symptoms under control and make life livable. Dr Seo told me people with a lot of sinus involvement have the most trouble being lower than 10 mg pred. As we know, even if you're in remission you can still have significant symptoms that require pred. Fortunately that wasn't the case with me.
    As drz keeps telling me, those of us with a lot of sinus involvement have had significant structural damage to the sinuses and the whole area. So we will keep having lots of excess mucus and other issues even as we head toward remission, because the damage is mostly permanent and we will always have the symptoms. I'm not sure where inflammation comes into the picture if we are in remission. I feel close to remission, but am still at 10mg pred and 15mg/wk MTX and my doc hasn't talked about lowering either. So, that would be a medicated remission, of course. I expect to have the nasal/sinus/ear symptoms, and the bronchial symptoms from the sinus drainage, the rest of my life and wouldn't be surprised if I stay on pred indefinitely. But it is all speculation at this point.
    Anne, dx'ed April 2011

  9. #19
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    Have your doctors told you what to do if you have an accident, surgery, severe stress, etc while on pred? It's very important
    They haven't told ME, I don't think..... I did have some oral surgery and the surgeon was pretty savvy about Wegs and knew I was on pred.... I don't remember what we did about it.
    Anne, dx'ed April 2011

  10. #20
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    This applies to anyone on pred and every doctor normally thoroughly informs a patient when s/he is put on pred doses 20 mg or higher for at least 3 weeks. (That's the dose and length of time necessary to shut down the adrenals) But PLEASE VERIFY this with your own doctor, as I cannot give medical advice.

    If you have an accident, trauma, surgery, severe stress event, etc. it can put you into an adrenal crisis, which means your usual pred dose is not enough to keep you alive. This is fatal within 24 hours if not addressed. Normally you need to take double your daily pred dose as soon as possible, but if you're already at higher doses (eg 60 mg or higher) you might need less. If you are unsure, you MUST call your doctor immediately (page them) OR go to the ER immediately.

    This is also true for one year after you go off pred. You should always carry enough pred with you and your emergency card in your wallet and/or Medical alert necklace should indicate this.

    All of my docs have told me this (even the lousy ones). It's standard of care.

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
  •