User Tag List

Likes Likes:  172
Page 4 of 6 FirstFirst ... 23456 LastLast
Results 31 to 40 of 59

Thread: Pred Uglies

  1. #31
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, Marta!

    I also discussed another pred taper with Dr VF. I was thinking about tapering at 0.5 mg/month. She thought that might work, but reminded me that 1 mg pred pills are very difficult to cut, so she suggested the following:

    Month 1: Alternate 5 mg and 4 mg (average 4.5 mg/day)
    Month 2: Alternate 5 mg and 3 mg (average 4 mg/day)
    Month 3: Alternate 5 mg and 2 mg (average 3.5 mg/day)
    Month 4: Alternate 5 mg and 1 mg (average 3 mg/day)
    Month 5: Alternate 5 mg and 0 mg (average 2.5 mg/day)
    Month 6: Alternate 4 mg and 0 mg (average 2 mg/day)
    Month 7: Alternate 3 mg and 0 mg (average 1.5 mg/day)
    Month 8: Alternate 2 mg and 0 mg (average 1 mg/day)
    Month 9: Alternate 1 mg and 0 mg (average 0.5 mg/day)
    Taper is (hopefully) complete.

    Just waiting for the scrips to hit the pharmacy...
    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

  2. Likes Alysia, Jaha liked this post
  3. #32
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,213
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's a good one too Pete. I have only tried cutting 1mg pills once. It sucked. That's why I do the alternating thing as well, but I tried this system that she suggested (the first time I was weaning) and found the jump between days a bit much. That's why I would play around with the averages based on how I'm feeling. You can always work toward an average and play with the doses to suit your body. Mine didn't work with the above methodology, but it did with me just listening to my body. That's why I don't have an exact recipe, because we all react different to this 'wonder' drug.... ha ha 'wonder'.... but mine is pretty similar in the averages, just goes about it a different way.

    Month one: Alternate 5 and 4 (average 4.5)
    Month two: Just take 4 all month (average 4)
    Month three: Alternate 4 and 3 (average 3.5)
    Month four: just take 3 all month (average 3)
    and so on and so forth.... until that magic month when you realize you're at .5mg/day and next month is nothing.

    Anyways, as long as you know that this is a longish process and are not hard on yourself with the time it's taking, I am sure you will do great. Also, like I said, you might have issues at various times, and what they don't tell you is to go back to the last dose that you felt OK at, steady yourself for a bit (week, two weeks... whatever you need) and then try the taper again, but maybe a little less drastic of a drop.

    Looking forward to reading how it went.
    Big massive hugs.

  4. Likes Pete, Alysia, Jaha liked this post
  5. #33
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think the alternating method is easier but I didn't use it to get down to 5 MG. I did use combinations though of 5, 2.5, and 1's and did cut the 2.5 in half and went down by .25 every two or three weeks according to my symptoms. I had few problems going this very slow way but some people rather go real quick and suffer a bit along the way in order to get off or get down lower quickly. Sort of personal choice. I am considering trying to go down to 4 mg and might try the alternating method to do that.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. Likes marta, Pete, mishb, Alysia, Jaha liked this post
  7. #34
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,213
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default

    Oh hello old friend. I haven't been on here much at all, and I only come on when an email tells me to come on, ha ha ha. I'm pushed around by emails.
    It's so nice to see your picture, and words of wisdom again.
    I have nothing intelligent to say but wanted to come on and say a big fat hello, and send you even bigger and fatter hugs.

  8. Likes mishb, Alysia, Jaha liked this post
  9. #35
    Join Date
    Aug 2017
    Location
    Surrey BC
    Posts
    83
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    LOVE IT Marta
    thank you for sharing this is going to help me.
    love your smiles and your so beautiful

  10. Likes Alysia, marta, Jaha liked this post
  11. #36
    Join Date
    Aug 2017
    Location
    Surrey BC
    Posts
    83
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I will be grateful to read about your techniques of weaning pred. I still have no idea how long I will be on them for (never explained to me from Rheumy) started at 50 mg sept 12 and down to 20 mg starting today for 2 weeks and then 10 mg. I want off it, I can't handle how it effects my moods and all the mood swings I get. Going down my 10 mg each time, isn't that lot's at one time to lower it?

    Quote Originally Posted by marta View Post
    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.

    Attachment 2625

    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.

  12. #37
    Join Date
    Aug 2017
    Location
    Surrey BC
    Posts
    83
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I am trying to understand how you go down to say 4mg when the pills come in 5 mg dose? Something I am not understanding or miss reading. I started at 50 mg Sept 12 and down to 30 for the last week and now starting today down from 30 to 20. I think this is just too fast, but this is the order's by Rheumy and then in 2 weeks I go down to 10 mg and from there I don't know the dose.
    I now understand my my mid back hurts so bad

  13. #38
    Join Date
    Aug 2017
    Location
    Surrey BC
    Posts
    83
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm reading all the post here to learn about weaning. Am I reading it correct, you and other's were taking 100mg a day of steroids? or was this weekly?
    Wow, still so much to learn.



    Quote Originally Posted by LisaT View Post
    This thread is really helpful. Thanks Marta, for starting it and for all the detailed info on weaning off of prednisone. I want to try. I'm on 10 mg now and just had my second RTX five days ago. i'll wait a bit longer, as I feel like I go through a temporary withdrawal after the 100mg given with the infusion. In the days post-infusion I have been getting the same aches, headaches, etc. as when weaning down. So I'll wait until I'm back to my own personal normal (if I wait until I feel good or well, I'm afraid it might not happen; I can't remember the last time I felt consistently good for a while. I'm praying the RTX will accomplish that, but don't want to assume anything as I know it affects everyone differently).

    Everyone is right, you're beautiful at all the different stages in your pics. I also understand the feeling of looking in the mirror and not recognizing yourself. I feel so shallow for being so fixated on it, but the extra weight and seeing my chipmunk cheeks in photos upset me immensely. (My profile pic is from a few months back before i went up to 10 mg and started puffing up. Who wants their pred uglies to be their profile pic, after all?)

    I'm always amazed by other Weggies' stories of biking, skiing and hiking and don't really understand how you do it. Is the fatigue less of an issue for some? Do you just push through it amd go anyways, and does that eventually make it improve? I've had brutal fatigue for years, long before diagnosis (initially diagnosed as fibro, then RA, now dual doagnosis of RA and GPA and nobody has discredited or confirmed fibro). Every single time I try to get back into some form of exercise other than walking (even yoga), I end up in muscle spasm and pain, fatigue, flare, or all of the above. It's discouraging and I don't want to just give up, but I'm not sure how to plan for success. Maybe i just have to do dog walks for now and hope the rituxan gives me superpowers. I felt a little better yesterday and went for my first decent walk since the infusion, and did a few things around the house. I tried really hard not to overdo it. Today I'm a mess again (pain, neck all jammed up, no energy). So I'm back on the couch. Doctors and well-meaning non-spoonies are constantly advising me to exercise. I feel that until they've lived my reality, they have no clue. So I'm bringing it up here in the hopes that you or others who deal with this might have some concrete advice that works. Sorry to whine a little. Sorry it's also a little off-topic. Hopefully it's related enough that everyone will forgive me.

  14. #39
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Susan,

    Some folks on here were, indeed, taking 100 mg/day of pred. I never took more than 60. Initial tapers from high doses can proceed faster. From 60, I dropped 5 mg every two weeks. Once I got down to 20, the taper got much more gradual, especially once below 10 mg. Your body, when healthy, generally makes about 10 mg/day of cortisol, the hormone prednisone replaces. The body needs more time to resume normal production. In some cases, it doesn't, and a daily low dose is needed.
    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

  15. Likes Alysia, drz, Jaha liked this post
  16. #40
    Join Date
    Oct 2017
    Location
    North Carolina
    Posts
    42
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had no idea weening may get more difficult ... down to 20 mg now for a couple of weeks. I will post my story soon if I can stop perusing all this great info ...

  17. Likes marta, Jaha liked this post
Page 4 of 6 FirstFirst ... 23456 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
  •