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Thread: Predinisone reductions

  1. #21
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    Sorry to hijack the post but please read on: Our own lightwarrior has passed away, this is her daughter's post on Facebook

    "This is Valerie, Christi's daughter... As many of you may already know, on Friday 2/8/13, the most amazing, beautiful woman we call Mom ended her journey with us here on earth to begin another journey in spirit with the Lord. Her services will be held at Immaculate Conception this Thursday 2/14/13 from 3-5pm. We will begin at 3pm with a playlist of her favorite songs, do her Rosary at 3:30pm, then the mass at 4pm. Any and all friends are welcome to come. We love and will miss her more than any words could ever express....."
    Rest in peace and may the light always shine for you.
    Jolanta

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    I like Tom have been up and back down on preds numerous times. It seems that everytime I taper all the way to 10mgs, I end up in the hospital or with a sed rate of amost 80. I am now trying to taper off 30mgs and am at 22.5 this week. My rheumy only wants me to decease by 2.5 per week until I get to 10mgs and see what happens next. Tapering to fast will cause most of us various reactions.
    Jana
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    10mg is as low as I have been since the beginning. 60 mg for nearly a year and then tried to taper with bad results. Im at my 20 mg starting today and will be on that for another 3 weeks I guess. Like I said in another reply to this, my breathing has gotten worse thru out the last year that I was on 40 mg and seems to get worse every month or so. I just hate going back up on the pred because of roid rage.

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    Thanks, Jolanta... I just finished reading another thread about Lightwarrior. I'm reeling from the news; though having not known her as long as others on here have, we did have some personal communications. It is always so hard to lose a friend. There are so many on here that I would like to meet in person, and Christi was definitely one of them. My heart goes out to Valerie and the rest of her family and friends.
    Anne, dx'ed April 2011

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    Just seeing this thread. Bob, the Marshall Protocol is a fringe theory. It's a supposed treatment for autoimmune conditions (all of them!), which includes abstaining from ALL Vitamin D intake indefinitely. I've never heard of a holistic physician who thinks this is a reasonable treatment. On the contrary, a great deal of research has shown that many AI diseases respond favorably to higher levels of D.

    If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.

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    Quote Originally Posted by Sangye View Post
    If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.
    I actually taught my GP something the other day.

    Since I don't see my rheumy again until June (unless necessary) and they have put me in the hands of my GP (who can contact the rheumy at any time), I thought I would ask my GP about the pred taper that the rheumy wants me to do - get from 5mg to 2.5mg in 6 months.
    I went from 5 to 4 and was doing okay at 4 and stayed on 4 for 7 weeks. I wasn't sure whether to go 3 3/4 or 3 1/2 or just 3 so I decided to give my GP a visit.
    He said that he had never heard of a slow steady taper like this - whenever they taper someone from 5mg to zero, the first taper is from 5 to 2.5, they have never done 5 then 4 then 3 etc.
    My Aunty got very ill from an 8 week taper from 5 to zero and I told him this and that my rheumy wanted me to taper 2.5mg over a 6 month period (he also had a letter from the rheumy stating this). My GP said that this is a new way a thinking for him and he will let all of the other doctors in the practice know, at their next meeting.......I hope he does.

    Anyway, we decided to go from 4 to 3 and see how that goes and if it doesn't feel right I will go back up to 4 and then do it in halves or quarters.
    I have been on 3mg for just over a week and so far, so good. I guess I will stay here for a month or two and then the next drop is only another half to 2.5

    I have not and will not (during this time) reduce my vitamin D as my levels were close to zero before commencing them and I never want to go back there again.
    Keep Smiling
    Michelle


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    Quote Originally Posted by jola57 View Post
    Sorry to hijack the post but please read on: Our own lightwarrior has passed away, this is her daughter's post on Facebook

    "This is Valerie, Christi's daughter... As many of you may already know, on Friday 2/8/13, the most amazing, beautiful woman we call Mom ended her journey with us here on earth to begin another journey in spirit with the Lord. Her services will be held at Immaculate Conception this Thursday 2/14/13 from 3-5pm. We will begin at 3pm with a playlist of her favorite songs, do her Rosary at 3:30pm, then the mass at 4pm. Any and all friends are welcome to come. We love and will miss her more than any words could ever express....."
    Rest in peace and may the light always shine for you.
    I haven't been on here for awhile and this is the first I heard about our Light warrior. I knew she was sick while getting all those rtx infusions and was in and out of the hosp. but what happened ? My prayers go out to her family. I'll miss her on here,but know that her and Al are now having deep discussions !!
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by mishb View Post
    I actually taught my GP something the other day.

    Since I don't see my rheumy again until June (unless necessary) and they have put me in the hands of my GP (who can contact the rheumy at any time), I thought I would ask my GP about the pred taper that the rheumy wants me to do - get from 5mg to 2.5mg in 6 months.
    I went from 5 to 4 and was doing okay at 4 and stayed on 4 for 7 weeks. I wasn't sure whether to go 3 3/4 or 3 1/2 or just 3 so I decided to give my GP a visit.
    He said that he had never heard of a slow steady taper like this - whenever they taper someone from 5mg to zero, the first taper is from 5 to 2.5, they have never done 5 then 4 then 3 etc.
    My Aunty got very ill from an 8 week taper from 5 to zero and I told him this and that my rheumy wanted me to taper 2.5mg over a 6 month period (he also had a letter from the rheumy stating this). My GP said that this is a new way a thinking for him and he will let all of the other doctors in the practice know, at their next meeting.......I hope he does.

    Anyway, we decided to go from 4 to 3 and see how that goes and if it doesn't feel right I will go back up to 4 and then do it in halves or quarters.
    I have been on 3mg for just over a week and so far, so good. I guess I will stay here for a month or two and then the next drop is only another half to 2.5

    I have not and will not (during this time) reduce my vitamin D as my levels were close to zero before commencing them and I never want to go back there again.
    Im holding at 20 mg but my breathing is suffering. This is the same problem Ive had through out this whole journey so far. Since my taper Ive had my 02 go from 2 liters, with or with out activity to 3 liters with activity and might have to call again this week with a further reduction in my lung capacity. As for the Vitamin D, my oncoligist put me on a 1000 units per day and when I was dx'd with wegs, I was told to stay on it for now and havent heard different since. I want bad to reduce the pred and bone density test show some osteroparosis. Im not holding out for a reduction below 10 mg, the lungs will require that much and one criteria that I would have to meet for a lung transplant is that I would need to be reduced to zero pred or a max. of 10 mg per day and less if possible. Had one Dr at the hospital tell me he thought the pred redcutions caused my exasperations so I figure I will be going back up at my next appointment. That was the other option when he moved me to 3 liters, The pulmo want to avoid raising the dose again.

  9. #29
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    Quote Originally Posted by Sangye View Post
    Just seeing this thread. Bob, the Marshall Protocol is a fringe theory. It's a supposed treatment for autoimmune conditions (all of them!), which includes abstaining from ALL Vitamin D intake indefinitely. I've never heard of a holistic physician who thinks this is a reasonable treatment. On the contrary, a great deal of research has shown that many AI diseases respond favorably to higher levels of D.

    If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.
    I tried it...and got a cold. So I agree...it's bunk! I'm trying .5 mg increments instead of full 1 mg increments. Went to 3.5 this week...we'll see how that goes. Feels less severe than 5 to 4 felt. All in all I feel pretty good other than body aches. Though that cold seemed to pinpoint my involvement areas...I found that weird. Went straight to the left side of my chest and left the right side mostly alone.
    ~ Bob

  10. #30
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    Quote Originally Posted by Psyborg View Post
    I tried it...and got a cold. So I agree...it's bunk! I'm trying .5 mg increments instead of full 1 mg increments. Went to 3.5 this week...we'll see how that goes. Feels less severe than 5 to 4 felt. All in all I feel pretty good other than body aches. Though that cold seemed to pinpoint my involvement areas...I found that weird. Went straight to the left side of my chest and left the right side mostly alone.
    Interesting, Bob. My chest doesn't have a right or left side preference for WG involvement. But I did get a fairly moderate cold a few months ago, after not having caught anything since dx, and back came the WG-type coughing and most pronounced joint pains, those in my hands. Then the cold and joint pain went away, and I felt a little better, but as I suspected, I was heading slowly into a WG flare which finally showed up in my blood tests and I'm being treated for now with higher med doses. It is working, I am coming out of the flare and feeling like my old Weggie self. But it goes to show what a little cold can do, and also how good we become at monitoring our symptoms and what is going on in our bodies.

    So, pred reduction is on hold for me now, and when the time comes, the Marshall Protocol will not be involved....
    Anne, dx'ed April 2011

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