User Tag List

Likes Likes:  172
Page 2 of 6 FirstFirst 1234 ... LastLast
Results 11 to 20 of 59

Thread: Pred Uglies

  1. #11
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Pete View Post
    Thanks, Marta!! This looks like a good way to get off pred. I'be been at 5 mg for most of three years and want to try to get off again.
    I hope it works for you Pete.

    The first go around it took me several years to get off the pred completely. This time around it was less than a year using this technique. Like I said though, there is a level of grossness there, but it really does have a distinct 'predness' to it. It's hard to describe, but I always know it's pred wean symptoms when there is a deep, dull pressure in my ears, throat and Eustachian tubes. Everything else aches, but the ear pressure thing always gives me some comfort that it's the wean and not the WG dog coming back.

    I don't know if that makes any sense. Regardless, I hope it works. And if you've already resigned to being on pred indefinitely, taking your time is no big whoop. So take your time.

    Go slow and trick it into submission, ha ha.

    I was keeping track on this go around and I'll attach the graphs from my wean (I know, I'm a total geek.)
    IMG_7555.jpg IMG_7556.jpg

    The graph size changes based on relativity, so the second (2017) looks like I'm taking more when in fact it starts at 2mg and goes to 0mg and the first (2016) starts at 20mg up to 50mg (with a couple of 100mg during RTX) and works down to 2mg. Super geek.
    Last edited by marta; 09-23-2017 at 02:50 AM.

  2. Likes Jaha, Alysia, LisaT liked this post
  3. #12
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,238
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, Marta!!

    I'm seeing Dr Villa Forte next Friday (and getting a dose of rtx). I plan to discuss a slooooow taper with her. Probably drop 0.5 mg/month or six weeks. Since my adrenals are making some cortisol, I'm really hoping they'll revive to full capacity.
    Last edited by Pete; 09-21-2017 at 12:26 PM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. Likes elephant, LisaT liked this post
  5. #13
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Oh Pete, that's so awesome.
    RTX is always a turning point for the better for me.
    I hope it is for you as well.

    I'm sure that they'll come back and be very happy little adrenals to be working again.
    The intrinsic intelligence of our body is amazing, we just gotta have faith in it.
    It has hiccups sometimes, but overall it's an amazing machine, after all, it was designed to carry around some amazing souls.

    All the very very best with the RTX and if I can help in any way with the taper, let me know.

    Peace, love and serious power.

  6. Likes Pete, Alysia, LisaT liked this post
  7. #14
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,238
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

    Default

    I've been getting an annual dose of rtx since 2013. It has done very well at maintaining remission. I've had no side effects from it. However, the combination of solumedrol and Benadryl puts me a bit out of sorts for a day or two. Getting a little exercise helps with that.

    Thanks for the good thoughts about the pred taper. I hope I'm off it by this time next year. Maybe that will help me lose the last of the pred pounds...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. Likes Alysia, LisaT liked this post
  9. #15
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's so good. No negative side effects from a treatment is the pinnacle of the pyramid for us.

    Just a couple of days ago, I got under a milestone weight that I haven't seen since before the flare last year. It's so awesome. It took a long time though, and a lot of kilometres on my new bike, ha ha. Not complaining because every single moment on my bike has been awesome.

    I also hope you're off it by this time next year. It's an awesome feeling, and one of the best milestones of treatment with this nasty little WG dog.

    All the best!!!! Only the best!

  10. Likes Pete, mishb, Alysia, LisaT liked this post
  11. #16
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,969
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    The only problem with me is that I am not on any other maintenance drugs.My rheumy said that this may be the only thing keeping me in remission ???? I once went to 4 1/2 for 1 day and it was horrible.How can you tell if its just withdrawal or something life threating?
    Life isn't about how you survive the storm, but how to dance in the rain !

  12. Likes Alysia, LisaT liked this post
  13. #17
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Debbie C View Post
    The only problem with me is that I am not on any other maintenance drugs.My rheumy said that this may be the only thing keeping me in remission ???? I once went to 4 1/2 for 1 day and it was horrible.How can you tell if its just withdrawal or something life threating?
    Hey Deb,

    I have a few comments, but I have to write a disclaimer and say these are my opinions, and I'm not a doc. Just saying what I think based on my own experience.

    My doc, (who I believe is an angel sent to earth via Mayo Clinic, Cleveland Clinic and now University of Alberta Hospital, ha ha) doesn't believe in a drug free remission.
    She told me that the research doesn't support the long term viability of a drug free remission. She didn't want me getting off my immune suppressants (Imuran)- ever.
    Me being me, I had to try drug free, and went totally drug free for just under a year, and them BOOM, got smoked last April.
    The flare I had last year totally sucked because it brought on some new symptoms that I've never had before (cavitating lesions in my lungs, eye involvement, pulmonary embolism, and a few others) and also each time you have an actual flare it's harder for the body and the meds to get rid of it, so avoiding flares at all cost is a primary goal.
    I learned my lesson. I'm staying on Imuran for ever now. But I had to try myself because I operate that way, ha ha.

    Second thought is that despite the fact that pred helps us so much, she doesn't like me on it. She lets me wean at my own schedule based on how I'm feeling (like anyone can tell me what to do and expect me to listen, ha ha ha, just ask my parents how that worked out for them,) but she doesn't like the long term pred use either. On a side note, I went to see her once for an appointment and there was a visiting doc from Mayo who she made me show my 'Pred Rage' shoes that I designed because apparently he absolutely hates the use of pred. He was an older gentleman with a white curled moustache and looked like the quintessential 1920's doctor who barely smiles.... he saw the shoes and his lip ever so slightly curled up to try and copy his moustache. It was a funny/odd moment. It looked like that was as much of a smile as he could make. I think he liked the shoes, and the idea.

    My rambling point is that I don't know that using pred as your only maintenance drug is a good path. Maybe it's worth a discussion with your doctor. I'm sure they can consult with other WG docs or the literature to see the benefits of pred induced remission vs immune-suppresant induced remission. Just food for thought.

    As for feeling crappy when you go down on the pred.
    Yes, it's normal.
    I find that it totally sucks.
    It feels like it's setting off a flare, but like I said before, you start to notice the nuance between the pred wean feeling and actual symptoms. For me it's a feeling in the ears that only happens when I wean pred. All the other gross feeling is very similar to WG symptoms, but it seems to diminish within a few days. If, and only IF, you want to go down and give it a go, this is what I would try in your shoes... If you're at 5mg take 4mg one day, then back to 5mg for the rest of the week. You might feel gross the day after the drop, but then you're back on your regular dose for the rest of the week. The following week try it again and see how it feels. If the next day is just as bad, then do that again. Following week, maybe do it two times a few days apart and see how it goes. It will definitely feel gross but you can use those test trials to get a handle of the difference between the wean grossness vs the disease activity grossness, and that knowledge alone gives you an upper hand and a sense of control over the situation. I don't think anything 'life threatening' can happen within a day if you've had no symptoms otherwise for a while. I know our WG gig is scary but it can't take us down that quickly. I always tell myself that when I go on holidays and have that little fear in the back of my head... 'nothing serious can happen in a couple of weeks if I've been pretty consistent before those couple of weeks'. It can get us quickly compared to other diseases, but not that quickly, we always have some wiggle room to catch stuff before it becomes life threatening. Hopefully that eliminates that fear from the equation.

    So there. That's my two wooden nickels.
    Maybe some fodder for your next doctor's visit.

    I hope with all hope that it works out for you regardless of what you chose to do. If you feel good on the pred alone and feel like you've got a handle on the disease, then who knows if it's really worth it to go this way. This is the beauty of this thing, life, we always get to chose which way it goes. I've made some bad choices, some good choices, but none that I regret (except for not taking the hand written Edgar Allan Poe book that I found in my grandparent's home in Bulgaria when I was 18, I regret that choice, but only that one,) because I've learned something valuable from every single choice I've made, good or bad.

    Big big hugs and super strength (what I'm sending you)
    Last edited by marta; 09-23-2017 at 02:58 AM.

  14. Likes Alysia, Debbie C, LisaT, drz liked this post
  15. #18
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Blah blah blah blah..... I just can't shut up.


  16. Likes Alysia, mishb, LisaT liked this post
  17. #19
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,203
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Another quick side note:

    My doctor was the first doctor to use RTX on a Wegener's patient in Canada in the 1990's.
    That's pretty cool.
    See why I love her so much?


  18. Likes Alysia, Debbie C, mishb, LisaT liked this post
  19. #20
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,116
    Post Thanks / Like
    Mentioned
    34 Post(s)
    Tagged
    0 Thread(s)

    Default

    Wow, Thanks a lot, marta, for all the info and techniques about weaning the pred.
    2 questions, if I may ask:
    1. How much time we better wait after the 100mg steroids IV of the rtx ?
    2. What are your "pred rage" shoes ?

    Last time that I tried to wean the pred (around 2013) I got CRAZY worst headaches. It felt like I needed to knock my head on the wall to stop the pains. If it will happen again I will quit. Some pains I can bear. Others I cant.
    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.

  20. Likes LisaT liked this post
Page 2 of 6 FirstFirst 1234 ... 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
  •