Trying to Wean Off Prednisone!
Question:
One doctor suggested alternating 15, 14 for the first week, 14 for the second, 14/13 on alternate days for a week or so, then 13 for a week, etc.
This worked for me. It took awhile, but was effective. I should add that if the new reduction brought on significantly more symptoms I would bump up a notch and stay there at least a week before trying to reduce again. I also added an occasional pain killer to my med list. I found that I had "mini-flares" after a reduction that would last only a few days and then taper off. The pain killer would get me over the hump. Good luck, Ebba
Response:
My understanding is that if you take prednisone for a long time your adrenal glands stop producing cortisone so it may be necessary to take it for a life time. I’ve been on varying doses of prednisone for 14 years and I can’t go below 5 mg. When I have surgery I need to have a lot of extra steroids too because my body is no longer able to produce the cortisone needed for the stress. Deb – Hide quoted text — Show quoted text – Hi, From reading some of these postings, I’ve notice where some of you have had success in weaning off of Prednisone. I CAN NOT seem to do it. I’ve had RH for 10 years. Started with a swollen ankle, a knee, a finger, etc. seemed like a joint here and there at a time over the 10 years. I’ve been on 10mg. of Prednisone for the last 6 or 7 years, and have tried to come down slowly, but can’t seem to. Now, my RD just raised me to 15mg. and I’m really not gungho about it. For the most part I’ve been pretty much under control, however, I’m having my biggest flare now and have gone from a couple of fingers and a thumb affected to almost all joints in my fingers. I work with a keyboard all day and my Dr. also added Penicilliam to my many other drugs as follows: 200 mg. Plaquenil – 2 daily 500 mg. Sulfasalzadine – 2 daily 15 mg. Prednisone 200mg Oruvail Pennicillaim 250 mg – starting 1 a day My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
I try to keep my prednisone intake as low as possible, too. What I’ve had to do is taper off 2.5 mg. at a time, and stay at that level for 2 weeks at a time. If I go down by 5s, it throughs me into a flair, also. Good luck. _____ The Skipper
Because I was put on prednisone when it was thought that I had AS, I am now stuck in the situation of being on oral steroids while having PA. As most know, pred is not recommended for those with PA. Getting a prescription for 1 mg. pred allowed me to decrease ve-r-ry slowly, 1/2mg at a time. That sounds excrutiatingly slow, but anything else caused a terrible flare. I am down to 3 mg. What allowed me to decrease finally to a low level was the MTX. When the injections were increased to .7cc(17.5mg), I started feeling great and was able to address the pred issue finally. Carol Human beings are flawed individuals…the cosmic bakers took us out a little too early. That’s why we’re as crazy as we are. Jimmy Buffett
Response:
I try to keep my prednisone intake as low as possible, too. What I’ve had to do is taper off 2.5 mg. at a time, and stay at that level for 2 weeks at a time. If I go down by 5s, it throughs me into a flair, also. Good luck. _____ The Skipper – Hide quoted text — Show quoted text -Hi, snip My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
Greetings the Group, Re the postings relative to this topic: The point has been made over and over that it is dangerous to taper down too fast. I want to emphasize the validity of this point of view. I was on 15 mg MTX/WK and 30 mg Prednisone daily to control a very aggresive form of vasculitis. Under direction of my doctor, a rheumatologist, I tapered down at rate of 5 mg/wk to 20 mg/wk, then 1 mg/wk down to 10. When I reached 20, some of my original symptoms began recurring. I took pain killers mask the symptoms. On the fourth day of 10 mg, the vasculitis again seized me, shutting off the blood to the sixth cranial nerve causing the right eye to roll inward and upward. Also severe sinusitis returned and the nerves in the inner ears were further damaged after recuperating for almost one year from the original afliction. Sore and swollen throat returned. All of this happened in a matter of two or three days over 4th of July weekend. I don’t know when, or if ever, my eye will straighten, and have no way of knowing at this time just how much additional damage has been caused by cutting down on Prednisone to fast and too low. The seventh cranial nerve, was also again damaged. That nerve controls the facial muscles. The right side of my face and corner of mouth sagged somewhat, but is picking up again gradually. All I can do is hope for the right eye. Do not be reluctant to question your doctor vigorously when you are advised to taper down or wean completely from Prednisone. My SED rate remained normal durning this relapse! "So Long" and sincere Best Wishes… Bernie
Response:
I continue to be amazed at how few docs use 1 mg prednisone tablets for tapering. Prednisone is relatively cheap so it can’t be cost. Dropping by 1 mg tends to be better tolerated than 2.5 mg when you are below a total dose of 20 mg. Of course, if you are on 60 mg, you can go down 5 mg at a time. In general, you don’t get into a flare with a prednisone taper if you stick to tapering no more than 10% of the total dose per week. Regards, Susan Hoch, M.D. On 13 – Hide quoted text — Show quoted text – I try to keep my prednisone intake as low as possible, too. What I’ve had to do is taper off 2.5 mg. at a time, and stay at that level for 2 weeks at a time. If I go down by 5s, it throughs me into a flair, also. Good luck. _____ The Skipper Hi, snip My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Susan Hoch
Response:
I was on 10+ mg/day for several years and found that I could only cut down by 1 mg or even 1/2 mg without triggering flares. I’d reduce dose by 1 mg and stay at that dose for at least two weeks. If I flared, I’d go back to previous dosage for a while, then cut by 1/2 mg for at least two weeks this obviously took quite a long time to get completely off. (years!) The only way I was able to gradually wean off prednisone was to try various other NSAIDs and DMARDS until I found a combination that worked well enough at reducing the inflamation. (Also — Being able to control my daily level of physical activity is a major factor in controlling my RA.) — <snipped – Hide quoted text — Show quoted text – My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
For a start, you have to go very slowly. From fifteen, dropping to 14 for a week, 13 for a week or so. If you start getting problems, try holding at that level for another week. One doctor suggested alternating 15, 14 for the first week, 14 for the second, 14/13 on alternate days for a week or so, then 13 for a week, etc. The thing is to not look for numbers and not feel discouraged, but to try for steady progress to get down. If you go to quickly, it almost guarantees failure, and will make life difficult without going back up. From 15 to 14, is about a 7% change. That’s enough of a change for one or two weeks. After you’re below ten, it might be better to go down by 1/2 a milligram at a time. Just try it and see how you do. It seems to me that many doctors ask you to rush it down, going from 10 to 7 1/2, a 25% reduction in one week. That’s just too fast, if you’ve been on it a while. mike – Hide quoted text — Show quoted text – Hi, From reading some of these postings, I’ve notice where some of you have had success in weaning off of Prednisone. I CAN NOT seem to do it. I’ve had RH for 10 years. Started with a swollen ankle, a knee, a finger, etc. seemed like a joint here and there at a time over the 10 years. I’ve been on 10mg. of Prednisone for the last 6 or 7 years, and have tried to come down slowly, but can’t seem to. Now, my RD just raised me to 15mg. and I’m really not gungho about it. For the most part I’ve been pretty much under control, however, I’m having my biggest flare now and have gone from a couple of fingers and a thumb affected to almost all joints in my fingers. I work with a keyboard all day and my Dr. also added Penicilliam to my many other drugs as follows: 200 mg. Plaquenil – 2 daily 500 mg. Sulfasalzadine – 2 daily 15 mg. Prednisone 200mg Oruvail Pennicillaim 250 mg – starting 1 a day My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
Hi, From reading some of these postings, I’ve notice where some of you have had success in weaning off of Prednisone. I CAN NOT seem to do it. I’ve had RH for 10 years. Started with a swollen ankle, a knee, a finger, etc. seemed like a joint here and there at a time over the 10 years. I’ve been on 10mg. of Prednisone for the last 6 or 7 years, and have tried to come down slowly, but can’t seem to. Now, my RD just raised me to 15mg. and I’m really not gungho about it. For the most part I’ve been pretty much under control, however, I’m having my biggest flare now and have gone from a couple of fingers and a thumb affected to almost all joints in my fingers. I work with a keyboard all day and my Dr. also added Penicilliam to my many other drugs as follows: 200 mg. Plaquenil – 2 daily 500 mg. Sulfasalzadine – 2 daily 15 mg. Prednisone 200mg Oruvail Pennicillaim 250 mg – starting 1 a day My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
When you try to taper the Prednisone, do you go down by 1 mg decreases every two or three weeks. Or do you jump from 10 to 5 mg. If you do go from 10 mg to 5 mg dfirectly, you are bound to flare. When tapering prednisone, the cardinal rule is when you GO LOW, GO SLOOOOOWWWwww. Regards, Susan Hoch, M.D. – Hide quoted text — Show quoted text – Hi, From reading some of these postings, I’ve notice where some of you have had success in weaning off of Prednisone. I CAN NOT seem to do it. I’ve had RH for 10 years. Started with a swollen ankle, a knee, a finger, etc. seemed like a joint here and there at a time over the 10 years. I’ve been on 10mg. of Prednisone for the last 6 or 7 years, and have tried to come down slowly, but can’t seem to. Now, my RD just raised me to 15mg. and I’m really not gungho about it. For the most part I’ve been pretty much under control, however, I’m having my biggest flare now and have gone from a couple of fingers and a thumb affected to almost all joints in my fingers. I work with a keyboard all day and my Dr. also added Penicilliam to my many other drugs as follows: 200 mg. Plaquenil – 2 daily 500 mg. Sulfasalzadine – 2 daily 15 mg. Prednisone 200mg Oruvail Pennicillaim 250 mg – starting 1 a day My question is to those who were able to get off the Prednisone – what other drugs were you on? If I even go down by 5mg. I REALLY flare. My Dr. feels I’ll never be able to go down, because we’ve tried before and I get worse. HELP!! All input appreciated. Thanks, Phyllis W.
Response:
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