Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi Kim, Here's a simple link on prednison: http://ibscrohns.about.com/cs/prescriptiondrugs/p/medprednisone.htm I'm no pro . . . but I'm a pro at hating the stuff =) And yes, they start you off at a high dose and then slowly bring you back down to zero. Going from 1 pill to zero pills is OK, AFTER you've come down off them. Going from 4 pills to zero would not be good. I hated pred because of what it was doing to me, hungry all the time, couldn't sleep, major weight gain, YUK! I had three cycles of pred, the last one being a whopper, starting at 60mgs/day and STAYING there, no coming down, not till the lumps showed some kind of healing. As soon as I got off the pred, the lumps returned. And yes, they took a chest x-ray to check for sarcoidosis and TB, it can been seen through that. I've had two of them, both negative. I have idiopathic EN, no reason for the lumps, like . You should go to the appts with your husband so the questions can be asked and you'll know what's going on. My husband's the same way sometimes . . . can't remember what was said, etc. Damned frustrating . . . and this disease on its own is frustrating ENOUGH!! I hope the pred helps your husband, sometimes it works great, and some people LOVE the stuff . . . we're all the same with this disease, but we're all different =) Have a great day! M =) > Message: 4 > Date: Fri, 20 Aug 2004 13:42:31 EDT > From: CNSVsurvivor@a... > Subject: Re: Re: Prednisone > > In a message dated 8/20/2004 1:48:11 AM Eastern Daylight Time, > patti_starz@y... writes: > > > never just stop taking > > This is absolutely true. > When you are on prednisone, your body stops making it's own natural > steroids. > It needs to be gradual reduction, so your body can kick in and start making > it's own again. This does not happen immediately. > > Jim > > > How long does it take? And after you are done reducing it are you save to > stop? I can't believe the derm didn't tell him this and my husband didn't > ask! URH! You'd think a doctor would say something like " be sure you don't > just quit taking this..... " etc. > > If the prescription said soemtihhng like this....take 4 pills three times a > day for the first day, 3 pills twice a day for the second day, 2 pills x > times a day for the third day....etc. is that how they ease you off it? > once he is done with that bottle he can stop? > > I'm not very big on drugs that your body can't do with out if you want to > stop. I'm a stickler about that kind of thing. But if it's what he needs > to help the EN I'm sure it's worth it. Right? > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 PrednisonE !!! I hate typos . . . always have to fix 'em =) And stop laughing at me JEFF! =) > Message: 4 > Date: Fri, 20 Aug 2004 13:42:31 EDT > From: CNSVsurvivor@a... > Subject: Re: Re: Prednisone > > In a message dated 8/20/2004 1:48:11 AM Eastern Daylight Time, > patti_starz@y... writes: > > > never just stop taking > > This is absolutely true. > When you are on prednisone, your body stops making it's own natural > steroids. > It needs to be gradual reduction, so your body can kick in and start making > it's own again. This does not happen immediately. > > Jim > > > How long does it take? And after you are done reducing it are you save to > stop? I can't believe the derm didn't tell him this and my husband didn't > ask! URH! You'd think a doctor would say something like " be sure you don't > just quit taking this..... " etc. > > If the prescription said soemtihhng like this....take 4 pills three times a > day for the first day, 3 pills twice a day for the second day, 2 pills x > times a day for the third day....etc. is that how they ease you off it? > once he is done with that bottle he can stop? > > I'm not very big on drugs that your body can't do with out if you want to > stop. I'm a stickler about that kind of thing. But if it's what he needs > to help the EN I'm sure it's worth it. Right? > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Greetings Kim I need to know the amount of prednisone you are taking. mg's Prednisone is a life saver, but harms are body in other ways. Osteoporosis mainly. There is no set schedule for prednisone reduction. Everyone is different. Prednisone can keep you alive, put your disease into remission, or you can be cured.(there are several definitions for remission)in my opinion no meds and no disease activity. A danger point for most people is about seven mg's. Maybe ruduce one mg a month. This cannot go fast. It is a miracle drug, but unfortunately we have to pay the consequences. Anymore questions feel free to ask. Friends, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Greetings M I was talking about mg's. You were on 50mg for a month and then just taken off? Short term of 40mg and then just taken off? The reduction gets hard the lower you go. Sounds to me like you were not tapered at all? I'm having brain fog today and cannot think straight. If this does not make sense, pleas let me know. Friends, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Jim? Are you sure you're talking about mgs?? I was on 50 mgs/day of prednisone for almost a month . . . and most short cycles of pred start at 40 mgs. Maybe you're thinking 7 gs? or maybe you meant 70 mgs?? Gosh, if it's just 7 mgs, then that would explain why it was kickin my butt! Take care all! M > Greetings Kim > I need to know the amount of prednisone you are taking. mg's > > Prednisone is a life saver, but harms are body in other ways. Osteoporosis > mainly. > > There is no set schedule for prednisone reduction. Everyone is different. > Prednisone can keep you alive, put your disease into remission, or you can be > cured.(there are several definitions for remission)in my opinion no meds and > no disease activity. > A danger point for most people is about seven mg's. > Maybe ruduce one mg a month. This cannot go fast. > It is a miracle drug, but unfortunately we have to pay the consequences. > Anymore questions feel free to ask. > Friends, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Jim . . . I was on 50 mgs for almost a month, then dropped to 40 mgs, for a couple weeks, then dropped by 10 mgs per week after that till they were gone. That was a long cycle, but I know others who stay on it for a lot longer. The short cycle starts at 40 mgs/day for one week, then 30 mgs/week for a week, and so on, till they're gone. I believe that's what . . . I forget her name, sorry, but that's what her husband is doing now?? I'm guessing, but I think the normal reduction is done weekly and by 10 mgs each week . . . gives the body a chance to keep up I suppose. There are body aches when you go off it and my hair was falling out like crazy . . . prednisone makes the hair grow, and when you're on it for a long period, it grows in places we don't want it to! I'm just glad to be rid of it . . . won't do that drug ever again if I can help it. M > Greetings M > I was talking about mg's. > You were on 50mg for a month and then just taken off? > Short term of 40mg and then just taken off? > > The reduction gets hard the lower you go. > Sounds to me like you were not tapered at all? > > I'm having brain fog today and cannot think straight. > If this does not make sense, pleas let me know. > > Friends, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Greetings M I have brain vasculits not EN. So, I think prednisone is different for me. More long term. Since 1993. Right now I am still on 45mg. 45 to 40 to 45 to 40 alternating days for two weeks Then staying on 40mg for one month. Then 40 to 35 for two weeks, and then one month on 35mg. Then continue this. Last time I crashed at 27.5mg, and had three brain hemmorages. Remember, I have vasculits, not EN. Going from ten to zero, does not sound good to me. I would think when down to 10mg. Reduce 2mg a week until 4mg. Then one mg until totally off. I hope I am not confusing you, because I sure am confusing myself.LOL Your friend, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Then one mg until totally off. I hope I am not confusing you, because I sure am confusing myself.LOL Reduce one mg a week. Told you I was confusing me. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi, Just had to jump in here... I was told to take 10 mgs. per day for 2 months then ween off 1 mg. every two weeks until down to 7 mgs. and see how things were going. By the time I reached 7 mgs. I had another flare up and she now has me on 15 mgs. per day til the lumps go away and then she wants me to go to 12 1/2 mgs. for one week then slowly come down from there. You are right, usually they don't seem to ween you a lot at any one time and I also think that's because they want to find out the right dosage for your system to handle. I am hoping I can get off this stuff as I'm not to pleased with the side affects. I am also on Plaquinil and was taking 200 mgs. twice a day and because of the flare up she now has me taking them 3 times a day for a month. She's not sure if the Plaquinil is doing what it should and may take me off it when I visit her on Sept. 13th. I've been on the Plaquinil since April and should be doing something by now. As for the Presnisone, I'm am surprised when I hear they have people coming off it 10 mgs. at a time, that sounds scary to me. Jackie S. Re: Re: easing off prednisone Greetings MI have brain vasculits not EN.So, I think prednisone is different for me. More long term. Since 1993.Right now I am still on 45mg.45 to 40 to 45 to 40 alternating days for two weeksThen staying on 40mg for one month.Then 40 to 35 for two weeks, and then one month on 35mg.Then continue this.Last time I crashed at 27.5mg, and had three brain hemmorages.Remember, I have vasculits, not EN.Going from ten to zero, does not sound good to me.I would think when down to 10mg. Reduce 2mg a week until 4mg.Then one mg until totally off.I hope I am not confusing you, because I sure am confusing myself.LOLYour friend, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 As for the Presnisone, I'm am surprised when I hear they have people coming off it 10 mgs. at a time, that sounds scary to me. It is more than scary. I think it should be called Malpractice. Jim Quote Link to comment Share on other sites More sharing options...
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