Question:
Howardo wrote: > When my wife’s doc wanted her to try every other day, he told her to double > up on the day she was taking it (i.e.: 30 mg instead of 15 and the next day > nothing). This did not work for her. In any case in general should not > reduce by more than 10 percent at a time. As the dose gets lower the > reduction gets smaller. Dr. Wallace’s book "The Lupus Book" has a very good > description on lowering pred.
Thanks for your input Howardo and welcome, It’s baffling me why her rheumy is suggesting just what you’ve tried. or the "15mg one day,then 5mg the next.", then keep weaning back (proportionately). (instead of one day some, the next day none). But I’m not an expert and don’t know if this is experimental on her rheumy’s part or a new type of protocol for weaning?? If you’d like to be on the ASL map, see the link at the bottom of Shelagh’s posts, then "view my Guest map", you can position yourselves approximately where you are (but please, not in the ocean like Grace was a while ago) <g> Best, J
Response:
Thanks; I’ll dig out that book… Grace. – Hide quoted text — Show quoted text -Howardo wrote: > Hello, > When my wife’s doc wanted her to try every other day, he told her to double > up on the day she was taking it (i.e.: 30 mg instead of 15 and the next day > nothing). This did not work for her. In any case in general should not > reduce by more than 10 percent at a time. As the dose gets lower the > reduction gets smaller. Dr. Wallace’s book "The Lupus Book" has a very good > description on lowering pred. > Good Luck, > Howard > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3EA0A18C.23F47924@casselman.net… > > Hi Lynne: > > Thanks for your comments. (No, I’m not flaring NOW…something I wrote > must > > have been misleading). > > I was in really bad shape yesterday, after taking NO prednisone. By night, > I > > was in a fever, exhausted, chilled…even today after taking my normal > dose, I > > felt a bit rough. I phoned the pharmacist and he advocated doing something > > gentler… so I think I am going to try to reduce more gradually. Maybe I > can > > try the every other day thing when I get lower on the drug… > > Grace.
Response:
Hi Howard, I don’t recall seeing you before. I would like to welcome you, if you are new here. Please join us anytime. BJ-Sk. Canada "Howardo" <hoestreic…@earthlink.net> wrote in message
news:k6coa.30396$ey1.2753790@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Hello, > When my wife’s doc wanted her to try every other day, he told her to double > up on the day she was taking it (i.e.: 30 mg instead of 15 and the next day > nothing). This did not work for her. In any case in general should not > reduce by more than 10 percent at a time. As the dose gets lower the > reduction gets smaller. Dr. Wallace’s book "The Lupus Book" has a very good > description on lowering pred. > Good Luck, > Howard > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3EA0A18C.23F47924@casselman.net… > > Hi Lynne: > > Thanks for your comments. (No, I’m not flaring NOW…something I wrote > must > > have been misleading). > > I was in really bad shape yesterday, after taking NO prednisone. By night, > I > > was in a fever, exhausted, chilled…even today after taking my normal > dose, I > > felt a bit rough. I phoned the pharmacist and he advocated doing something > > gentler… so I think I am going to try to reduce more gradually. Maybe I > can > > try the every other day thing when I get lower on the drug… > > Grace.
Response:
Hello, When my wife’s doc wanted her to try every other day, he told her to double up on the day she was taking it (i.e.: 30 mg instead of 15 and the next day nothing). This did not work for her. In any case in general should not reduce by more than 10 percent at a time. As the dose gets lower the reduction gets smaller. Dr. Wallace’s book "The Lupus Book" has a very good description on lowering pred. Good Luck, Howard "Grace Casselman" <gr…@casselman.net> wrote in message
news:3EA0A18C.23F47924@casselman.net… – Hide quoted text — Show quoted text -> Hi Lynne: > Thanks for your comments. (No, I’m not flaring NOW…something I wrote must > have been misleading). > I was in really bad shape yesterday, after taking NO prednisone. By night, I > was in a fever, exhausted, chilled…even today after taking my normal dose, I > felt a bit rough. I phoned the pharmacist and he advocated doing something > gentler… so I think I am going to try to reduce more gradually. Maybe I can > try the every other day thing when I get lower on the drug… > Grace.
Response:
Hi Grace, Doing a more gradual taper seems a wise decision to me. It should be a little easier that way. I hope it works for you. BJ-Sk. Canada "Grace Casselman" <gr…@casselman.net> wrote in message
news:3EA0A18C.23F47924@casselman.net… – Hide quoted text — Show quoted text -> Hi Lynne: > Thanks for your comments. (No, I’m not flaring NOW…something I wrote must > have been misleading). > I was in really bad shape yesterday, after taking NO prednisone. By night, I > was in a fever, exhausted, chilled…even today after taking my normal dose, I > felt a bit rough. I phoned the pharmacist and he advocated doing something > gentler… so I think I am going to try to reduce more gradually. Maybe I can > try the every other day thing when I get lower on the drug… > Grace. > herbwormwood wrote: > > Hi, > > I have always taken alternate days. For 24 years. The idea is that your > > glands produce it on the day you are not taking it in the tablets. But I > > would have thought it would be very bad to try to reduce it during a > > flare. Is the flare real or is it your body protesting against the > > reduction? Prednisolone is addictive and any tapering will be highly > > likely to cause some syptoms coming up and shouting at you. > > Chat to your doctor and pharmacist and let us know how you get on. > > Best wishes, > > Lynne > > On Wed, 16 Apr 2003 23:17:15 +0100, Grace Casselman wrote > > (in message <3E9DD6A9.3A560…@casselman.net>): > > > Okay, I know many many of you have experience with coming down on, or > > > OFF, prednisone. > > > I mean, I guess I do too — as I was once on 50mg/day. I’ve been on 15 > > > mg for about a year (up once in there, trying to deal with a flare) > > > Today, my doctor told me to start taking my current dose every other > > > day. I’m nervous about that, because I do have some bad memories of an > > > earlier trial with alternate-day dosing… (I couldn’t tolerate it then; > > > although that was at a higher dose). > > > My doctor says the alternate day dosing will help kick-start production > > > of my own steroids (or whatever the natural equivalent is called)…he > > > says that the body should make an equivalent of about 7mg/day. > > > Anyhow, he told me if I’m struggling with it, to do it 15mg one day, > > > then 5mg the next… > > > Any thoughts or experiences to share? What’s "normal" in terms of side > > > effects/withdrawal? Should I expect to endure a certain amount of > > > fatigue while I get used to this? What about pain or fever? > > > Last time I came down "too fast"; a rash popped up, but I resumed my > > > previous dose, and then came down more gradually… > > > Grace. > > > p.s. A few weeks ago I cut my Plaquenil dose in half; and am just taking > > > one pill of that, per day… > > — > > for an alternative look at current events, go to > > http://www.greenpeace.org.uk/
Response:
Hi Lynne: Thanks for your comments. (No, I’m not flaring NOW…something I wrote must have been misleading). I was in really bad shape yesterday, after taking NO prednisone. By night, I was in a fever, exhausted, chilled…even today after taking my normal dose, I felt a bit rough. I phoned the pharmacist and he advocated doing something gentler… so I think I am going to try to reduce more gradually. Maybe I can try the every other day thing when I get lower on the drug… Grace. – Hide quoted text — Show quoted text -herbwormwood wrote: > Hi, > I have always taken alternate days. For 24 years. The idea is that your > glands produce it on the day you are not taking it in the tablets. But I > would have thought it would be very bad to try to reduce it during a > flare. Is the flare real or is it your body protesting against the > reduction? Prednisolone is addictive and any tapering will be highly > likely to cause some syptoms coming up and shouting at you. > Chat to your doctor and pharmacist and let us know how you get on. > Best wishes, > Lynne > On Wed, 16 Apr 2003 23:17:15 +0100, Grace Casselman wrote > (in message <3E9DD6A9.3A560…@casselman.net>): > > Okay, I know many many of you have experience with coming down on, or > > OFF, prednisone. > > I mean, I guess I do too — as I was once on 50mg/day. I’ve been on 15 > > mg for about a year (up once in there, trying to deal with a flare) > > Today, my doctor told me to start taking my current dose every other > > day. I’m nervous about that, because I do have some bad memories of an > > earlier trial with alternate-day dosing… (I couldn’t tolerate it then; > > although that was at a higher dose). > > My doctor says the alternate day dosing will help kick-start production > > of my own steroids (or whatever the natural equivalent is called)…he > > says that the body should make an equivalent of about 7mg/day. > > Anyhow, he told me if I’m struggling with it, to do it 15mg one day, > > then 5mg the next… > > Any thoughts or experiences to share? What’s "normal" in terms of side > > effects/withdrawal? Should I expect to endure a certain amount of > > fatigue while I get used to this? What about pain or fever? > > Last time I came down "too fast"; a rash popped up, but I resumed my > > previous dose, and then came down more gradually… > > Grace. > > p.s. A few weeks ago I cut my Plaquenil dose in half; and am just taking > > one pill of that, per day… > — > for an alternative look at current events, go to > http://www.greenpeace.org.uk/
Response:
Okay, I know many many of you have experience with coming down on, or OFF, prednisone. I mean, I guess I do too — as I was once on 50mg/day. I’ve been on 15 mg for about a year (up once in there, trying to deal with a flare) Today, my doctor told me to start taking my current dose every other day. I’m nervous about that, because I do have some bad memories of an earlier trial with alternate-day dosing… (I couldn’t tolerate it then; although that was at a higher dose). My doctor says the alternate day dosing will help kick-start production of my own steroids (or whatever the natural equivalent is called)…he says that the body should make an equivalent of about 7mg/day. Anyhow, he told me if I’m struggling with it, to do it 15mg one day, then 5mg the next… Any thoughts or experiences to share? What’s "normal" in terms of side effects/withdrawal? Should I expect to endure a certain amount of fatigue while I get used to this? What about pain or fever? Last time I came down "too fast"; a rash popped up, but I resumed my previous dose, and then came down more gradually… Grace. p.s. A few weeks ago I cut my Plaquenil dose in half; and am just taking one pill of that, per day…
Response:
Grace Can I ask why you cut down on the plaquenil? Are you having problems with that or you just want to get off meds as best you can? The prednisone taper. My rhuemy usually drops my Medrol 1mg at a time. But ever so slowly. Like drop a mg every 3-4 weeks. I know it is different dosage than prednisone but I would think that if you are flaring right now, what is the point to taper your meds? I am confused here LOL. This is just my opinion but if you were told to try that, do it and then if for any reason you feel it is a problem then call him or her and review the idea of a slower taper down. I do know that sometimes after being on the prednisone that long you might just not produce cortisone very fast at alll, from what I have read. But sometimes if you taper, it takes time to get "over the hump" so to speak. Inother words you feel bad, so we panic and think I can’t do this. I have been told to "hang in there" and I bet most of us have at one time. Please if you feel uncomfortable doing what he wants? Then by all means call him back and relay your fears and concerns. Like asking to do your regular dose one day and then next day drop a few mgs and alternate like that? Just my idea, but call the doc ok? good luck janers
Response:
Hi Janers: My doctors have led me to believe that one Plaquenil pill per day is more of a normal dose than two — I had been put up to two Plaquenil several months ago during a "mini flare" — and now my doctor says I can go back to one… I’m not flaring now… that is, I feel really good. My CK count is still high — muscle inflammation (although remaining more or less at the same high level… not increasing). But I’m on a fair dose of Imuran, which is supposed to be "steroid sparing" and I’m on a monthly course for now of gammagobulin intravenously… which does seem to help my muscles… I’m developing cataracts, so it would be a good thing for my eyes to go down on (if not off entirely) the steroids… Grace.
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