User Tag List

Likes Likes:  172
Page 1 of 6 123 ... LastLast
Results 1 to 10 of 59

Thread: Pred Uglies

  1. #1
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Pred Uglies

    I just wanted you to see that the pred uglies that we all hate so very very much, always go away.

    The first time was shocking.
    I never thought they would go away.
    Couldn't imagine that I would see my old self again.
    I did.

    The second time, I decided to document the process.
    Here it is.

    pred face.jpg

    Always love yourself, and never ever listen to those voices in your head that are triggered by looking in the mirror.
    You will be you again. This I promise.

  2. #2
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,025
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Awesome ❤
    Y o u
    a r e
    b e a u t i f u l , marta, no matter what.
    Thanks for sharing.
    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.

  3. Likes Jaha, marta, mishb, Debbie C, LisaT liked this post
  4. #3
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,969
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I really wish I could get off it but with my adreanal glands not working theres not much of a chance. But my skin has thinned out sooooo much that if I slightly bump something I get those red marks. Right now I looked like I was on the losing side of a fight !!!! One thing I noticed about your pics, you are always smiling. Wish I had your outlook. Take care up there my friend...its about your time of year...skiing and cross-country.Have fun
    Life isn't about how you survive the storm, but how to dance in the rain !

  5. Likes Alysia, Pete, Jaha, LisaT liked this post
  6. #4
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Debbie C View Post
    I really wish I could get off it but with my adreanal glands not working theres not much of a chance. But my skin has thinned out sooooo much that if I slightly bump something I get those red marks. Right now I looked like I was on the losing side of a fight !!!! One thing I noticed about your pics, you are always smiling. Wish I had your outlook. Take care up there my friend...its about your time of year...skiing and cross-country.Have fun
    Oh Debbie, that so sucks. But I have to say that none of our adrenal glands work while we're on pred. That's the problem with this stupid drug (that is awesome when we need some pain management and inflammation control). After a couple of weeks of use, our adrenals stop. That's why the wean is the worst between 10mg and 5mg. I'm sure you know this so I don't want to come across as patronizing (something I'm very good at = accidentally sounding patronizing) so I'll stop, but if you want to talk about it, I have some techniques to wean. I am happy to share. Just say the word.

    I know what you mean about the red spots. My dad gets those. I'm on blood thinners now (as is he) but I never get those spots, whereas if he touches anything with his skin, it instantly looks like a massive blood blister - without the blister - under his skin. I always thought it was the blood thinners, but it might very well be pred, as he's been on it on and off for his Lupus. Interesting observation.

    I am always smiling because the alternative isn't that appealing. Ha ha. You can see in the 'O' from LOVE (I wanted to sign the message,) I'm not so smiley. I was so so so very bummed that day. I had just started the pred to alleviate some symptoms, and I think on that day we got a for sure that I was flaring. I thought I was done with this, but alas, reality hit hard that day. Also, isn't a smile on pred absolutely hilarious? Same size mouth, but in the sea of cheek flesh, it sure has a different appearance. Another lesson in perspective. Ha ha.

    I'm so stoked to ski again. We still have another month and a half until ski season, but I've been riding my bike like it's going out of style.
    Brian got me an electric assist mountain bike for Christmas (it came in mid January 2017) and I've managed to put on 2,800km since then. It helps, but I've been outside on my saddle, paddling my bike for that many kilometres (mostly with my honey.) I don't have words for how awesome and liberating it has been. I would recommend it to anyone who use to bike before getting sick. I feel alive this year because of that bicycle. I'm beating some people's records here (because it's super fun to go fast with it using the assist) and they're getting mad, but I feel like when they lose a significant portion of operational lungs, then they can bitch at me. In the meantime, I'm going to have as much fun as I possibly can because as we all know, who knows what tomorrow brings.

    Big hugs Deb.
    Stay strong, live long and prosper.

  7. Likes mishb, Alysia, Debbie C, Jaha, LisaT liked this post
  8. #5
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Alysia View Post
    Awesome ❤
    Y o u
    a r e
    b e a u t i f u l , marta, no matter what.
    Thanks for sharing.
    Thanks Alysia,
    YOU are beautiful.
    We all are beautiful.
    We just forget sometimes when we look at that massive person looking back at us in the mirror and that's why I wanted to post this.
    It's hard to see the true Self through a layer of pred flesh sometimes, but it's always there.
    It's hard to see the soul through eyes that have been pushed shut together by pred cheeks, but that sparkle always lives.

    I told my doc I was taking pictures when I first got on the pred last year. I told her I wanted to document the process because the first time was so shocking I refused to acknowledge the mirror and refused to have pictures taken of me. Now I knew the outcome and wanted to give others hope where sometimes it feels like a non-existent entity. She thought I was nuts to take photos of it. I think she might be right, but that's never stopped me before. Ha ha ha. Nuts is my middle name.

    Lots of love to you my friend.

  9. Likes Pete, mishb, Alysia, Debbie C, Jaha, LisaT liked this post
  10. #6
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,698
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Marta

    Nuts may be your middle name, but gorgeous is your first name.

    You always know the right words to say, at the right times.

    I also try not to have photo's taken of me......... until recently.
    I also decided not to colour my hair anymore. It's time to embrace me, the real me. greying hair, fine lines, and all.
    I'm in my 50's now and I have earned these trophies.
    In 2010 they gave me 3 to 5 years, we know that's all bull and that if the treatment is correct, we can go a lot longer.
    I said that I wanted to get to 50, well I have done that plus more, which is why I have now decided to embrace me.

    Maybe Nuts is my middle name too

    Love you long time
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  11. Likes Alysia, marta, Debbie C, Jaha, LisaT liked this post
  12. #7
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,025
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    I embrace you too, Michelle, marta and debra ❤
    (is it a girl's thread ? )

    marta, I will be grateful to read about your techniques of weaning pred. I am stuck on 5mg many years now (at times it goes up to 30-10mg).
    It is not that I am that brave to wean the pred, but now I am also on another steroid, budezon 6mg for my microscopic colitis, and will prob be on it for life, so maybe I can wean the pred a bit. Maybe. A bit.

    Thank you for this beautiful thread.
    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.

  13. Likes mishb, Jaha, LisaT liked this post
  14. #8
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by mishb View Post
    Thank you Marta

    Nuts may be your middle name, but gorgeous is your first name.

    You always know the right words to say, at the right times.

    I also try not to have photo's taken of me......... until recently.
    I also decided not to colour my hair anymore. It's time to embrace me, the real me. greying hair, fine lines, and all.
    I'm in my 50's now and I have earned these trophies.
    In 2010 they gave me 3 to 5 years, we know that's all bull and that if the treatment is correct, we can go a lot longer.
    I said that I wanted to get to 50, well I have done that plus more, which is why I have now decided to embrace me.

    Maybe Nuts is my middle name too

    Love you long time
    I think we can all call ourselves 'Nuts' - the really good nuts, the expensive ones, the rare ones.
    I've thought about letting my hair go natural, aka grey, but it's too long so I'd have to shave it and start from scratch. Not sure I'm ready to go there yet. Ha ha.
    I too am in my 50's now, so every birthday is a blessing. I shudder when I hear people complain about wrinkles. I am so grateful that I get to see my wrinkles because it means I'm getting older - something that was iffy in 2010, just like you.

    As for saying the right words at the right time, I'm glad you think so, because I went to bed last night and was questioning myself about my comments... "do I say too much" (yes) "do I come across as a know-it-all?" (yes) "do I come across as condescending?" (I hope not, but probably), and on and on it goes. So thank you for that.

    Stay strong (as always) and enjoy the ride, the wrinkles and the grey hair.

    Lots o'love back at ya!

  15. Likes mishb, Alysia liked this post
  16. #9
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,195
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Alysia View Post
    I embrace you too, Michelle, marta and debra ❤
    (is it a girl's thread ? )

    marta, I will be grateful to read about your techniques of weaning pred. I am stuck on 5mg many years now (at times it goes up to 30-10mg).
    It is not that I am that brave to wean the pred, but now I am also on another steroid, budezon 6mg for my microscopic colitis, and will prob be on it for life, so maybe I can wean the pred a bit. Maybe. A bit.

    Thank you for this beautiful thread.
    Pred wean.
    The grossest part of getting back to normal.
    I dread going on pred not only because of the lack of sleep, and how it makes you look but also because of the wean.

    A little context: As you probably know, our adrenal glands normally make between 9 and 11mg of corticosteroids per day. Once we start a pred regime, the adrenal glands are like "well we don't have to work any more, let's take a vacation" so they shut down. Once they shut down they start to atrophy. The wean is important because if you go too fast, you can trigger a flare, or you could go into adrenal crisis, and that's a life threat. What we're doing is not only waking up the adrenals so they can produce but also pulling them out of a state of atrophy. A significant task to say the least.

    So this is my take on it.

    We wean in big jumps (5mg) per week or couple of weeks until you get down to 20mg.

    Then from 20mg down I was dropping about 2.5mg per week or couple of weeks, early on I even went a month sometimes between drops. I always play it by ear and don't put any concrete dates into plan judging the wean based on how I feel and if I drop and feel super gross, I go back up to the previous dosage until I feel good, then drop a smaller amount and see how that works. Sometimes I've done that a few times.

    Once I get to about 12mg, I start to drop 1mg at a time every 2-3 weeks. That way I minimize the pain. It always hurts. I have figured out the nuances between WG symptoms, pred wean symptoms, and cold/flu symptoms. They're very similar but each has a different underlying flavour. I think the only way to figure that out is with experience. Here I also do the back and forth if needed.

    Below 8mg I found to be the worst. Between 8mg and 5mg in my experience sucked the most. I think that's because now you're operating below what your body needs (9mg minimum-ish) but your adrenals aren't working yet. It's that deficit that starts to wake them up, and it's a yuck fest. I found by about 5mg, it starts to even out. Below 8mg, I do 1/2 mg drop, and I don't cut my pills, I just alternate dosages to average out 0.5mg drop. So one day I'll do 8mg and the next day 7mg. Go like that for a while until you feel good physically, then you can even do one day 8mg, and two days at 7mg, and then keep increasing the 7mg days in a row and decreasing the 8mg days. Eventually you'll find yourself at 7mg. And again, I would do this at your own pace to try and make it as painless as humanly possible.

    You're at 5mg and want to drop, try taking 4mg one day a week. Then take 4mg two days a week and work your way down. If you've been on it for this long, don't beat yourself up for taking a long time. Take your time. Your body is obviously producing it's own corticosteroids if you're at 5mg, or maybe it just needs to be pushed just a little more to get those bad boys running.

    You can give yourself a half a year or more if you like to get off it, and just slow and steady... just keep tricking it by decreasing the dose ever so slightly from once a week, to twice a week, to three and eventually you'll be at 4mg. Be gentle with yourself. Both physically and psychologically. We tend to be our own worst critics sometimes, so by loving yourself and knowing that what is meant to be will be, eliminates that need for control and the associated stress that comes with wanting to control uncontrollable situations.

    I hope this helps.

    I send you lots of love and strength and healing jujus.
    Peace.

    P.S. This summer we had lots of smoke from wildfires in British Columbia and Washington State, and I found that the smoke was triggering my symptoms. I put myself on 10mg of pred for 4 days (twice this summer) and upped my Imuran by 50mg. I didn't consult with my docs, but it helped, and since it was only four days at a stretch, I could just stop it and carry on. Just food for thought.

  17. Likes mishb, Debbie C, Jaha, Alysia, LisaT, Keith, seied liked this post
  18. #10
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,130
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    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

  19. Likes LisaT liked this post
Page 1 of 6 123 ... 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
  •