Has anyone weened themselves off Prednisone?

If anyone has done this, How?? I have been taking Pred for 2 years now, and the doc has me on a roller coaster ride with them. I usually stay around 20-40mg, but have been as high as 160mg a day for a week or two at a time, when I have a flare. I cannot stand it anymore and I want off!! I have taken myself down to 20mg a day presently, but can't get lower without a flare popping up. Can anyone please offer some advice? Thanks!

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I havent been able to get below 10mg myself without a flare. I have heard that people have been able to get off of prednisone entirely and are currently taking methotrexate. I currently take 2.5mg of methotrexate 3 times per week. I'm going to ask my doctor to increase it. Wish me luck and good luck to you.

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I was fortunate that I was able to go on a course of prednisone for a year put on a whack of weight and then go into remission go off the drug lose the weight before going through another complete turn but after it was all over I went into a true remission or at least one I hope is a true remission. I am still tired all the time but these things will never go away but I do not need prednisone to control outward symptoms.

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I've been off for a while. My doctor weaned me off very slowly, and I have told her that unless I am actually dying, no prednisone. I have flares, and use inhalers, muscle relaxers and that sort of thing to treat the symptoms. I also sleep more, and am not able to do as much as I used to, but I'm okay with that. I think you just have to make a decision which is harder for you, sarcoid or being on pred, and go from there. Good Luck!

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I weaned myself off (don't tell my doc! he won't know until June) I am a nurse and was on a low dose to begin with. It was pure h*ll in the beginning, but thank God for provigil! Without it I would be a puddle.

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You could bump up a little and then go down more slowly than you normally do. That might help prevent flares.
This is my first taper and I'm going down 2.5mg per week until I get to 15 or 10 and then I'll go 1mg a week. (Started at 60 now at 20-so far so good.)

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I have weaned myself off twice now and this time have been off for nearly 6 months.

The only time I had significant problems was when I tried to do it too quickly causing horrific chest pains by dropping the dose from 25mg to 15mg and later a headache of such severity I still feel sick when I remember it.
The head pain occurred when I was nearly there and dropped from 2.5mg to nil. Was rushed to doctor who thought I had sarcoid of brain stem but amazingly 5mg of prednisolone and the pain left. Thus I stayed on 1mg for about 2 weeks then 1mg every second day for another week. Then I was fine. I believe you are dropping down too much and too quickly as your body has to have time to adapt. Good luck.

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Almost 3 years ago I was on Prednisone for almost 12 months because I was under the false impression that it would encourage remission. I only went as high as 20mg, so I didn't have as much of a difficulty as many of you would have. It definitely relieved the pain, inflammation & fatigue, but there is a health price with Prednisone. I decided that it wasn't going to cure me but it definitely was going to affect my health, so I came off it. I took months and was very cautious. During the last month I was actually halving 1mg tablets. I didn't have any serious affects, although my doctor was worried.
I must warn you that your sarc symptoms will probably be worse than you have ever experienced when you first come off pred. It was awful, but it does settle down. It makes me think that Prednisone is definitely not the answer.

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I stopped taking Prednisone for two weeks and don't think I would ever do that again. I had so many issues and was at the Dr's office or hospital more those weeks than any other time.. I have done the every other day thing though and that seems to be working a little better. But who knows how long that will last, I've only being doing this the past weeks. Good Luck: )

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I am currently tapering down on Pred. I bin on for over a yr now. Went as high as 1000mg for 5days cuz the swelling of my eyes wdnt go down with even 85mg. I was on 40 for while most recently when i started methotrexate. Bin on that for almost 2 1/2mths so i get to taper off pred. I'm at 10mg/wk of meth and start 15mg/day pred on thurs. Dr. had me go from 30 to 20 for 2wks then i do 15 for wk and 10 for wk and then down 1mg/wk after...hoping theres no flares. I bin feelin strange since i went down. My eyes feel swollen (my most recent flare was there) but im hopin im just paranoid.

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I started taking the contraceptive pill and came down 0.5mg per 7-10 days. The pill managed my hormones which would always give me cyclic monthly flare ups, and I used routine codiene/paracetamol pain relief.

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I have been off prednisone for over three years. I went to a high of 40mg and it took months if not almost a year to get off. I was on pred and azithioprine, but went off the azithioprine first.

It was my goal to get off all of the medicines. It is MY personal belief that the steriods and anti-inflammatories are great to use for short periods of massive inflammation, but are harmful for the long term. I used an extreme diet to make it easier to get off pred. This said, I still had to up my dose at different times to wean off the pred. Example, moving from 35mg to 30mg, I had to back up to 35mg and then back down to 30mg a few times to make it stick. I found that moving down in 2.5mg increments over several weeks (sometimes months) made it possible to get off prednisone completely. My Rheum was helpful, but I also had a stash of pred in different sizes (1mg, 5mg, and 10mg) and my GP (in case the Rheum didn't want to write a pred prescription that I could use).

Recommendation: Get a pill cutter or ask for smaller mg pills, and "slog" through the discomfort of coming down. It usually takes a few days to a week at each new level to "normalize". Come down in 1-5mg doses -- if you reduce your dose by 10mg, you will pay for it. Even a 5mg reduction can be tough.

To stay off, you must find other ways to bring the inflammation down. In my case, I know that wheat/gluten, nightshades (white potatoes, eggplants) and to a lesser degree, dairy, HFC and corn can raise my inflammation. Each person is different as to the causes, but you may consider looking at Live Right 4 Your Types for clues of what foods may create inflammation for you. BTW, the food solution is very slow; you may not see results for week or months. Hope this helps...

Good Luck - X

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Yep, weaned myself off by 5mg each month for several months and haven't had any side effects. Feeling much better.

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I let the doc do that. I've been on Pred for about 5 years. They have me down to 15 but I wouldn't do it without the docs knowing about it. I don't know what a "flare" is myself. I have neurosarc only & I've been told I'm progressive so I guess my whole life is one big friggin flare! They're weaning me off Cytoxan at the same time and all I want to do is sleep & veg. I'm too tired to come in here & vent lately but I get my treatment soon so I'll be full of pred. Just be careful.

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I'm in the process of weaning right at the moment. Went from 40 mg. to 20 mg. and have been weaning down slowly since. I beginning my 2 week regime at 4 mg. today for another two weeks. We do 1 mg. every two weeks. Hopefully within the next month to month and a half I'll be off altogether. All is good so far, but it's not been an easy journey! Good luck to you!

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When I was diagnosed 30 yrs ago I was taking 60mg a day. Everytime they tried to wean me off I got really sick again. Finally after trial and error I was put on 2.5mg daily for 4 years. I am off all drugs now except for Advair but my lungs are scarred and I have to use oxygen daily.

You can get off the Prendisone it just takes time and patience.

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I have been on and off Preds for twenty years. You have to come down slowly or have a physcotic breakdown. {by the way I had one of them on Ambience that I only took for 5 days] Not to digress you folks all better know the side effects of the monster. Your kidneys, your vision, your bones' of course weight. This is just a few items. I knew a woman with that "Dowager's Hump." Now we know the cause is osteoporosus. She wasen't even 50 and all bent up like an 80 year old shouldn't look like. She had been on Pred for more than twenty years. it was for another condition.

No one but no one should be on it except for short term uses. Your dosage is excepionally high and I would look for an altenate and a new Doc.. Good Luck

Ellen

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ive been on pred for about four months taking 20 mg. my doctor was very cautious, not wanting to make it hard for me to come off the pred. the drug worked wonderfully. i told him how i was feeling and he listend to my chest and said that it was clear. he began to give me instructions on how to wean off the pred. the way that i understood it, it was like taking off 5 mg at a time for two weeks at a time. i found myself down to five and i started having the breathing problem taking into account that my baby daughter gave me a cold. i was prescribed azithromycin 500mg once a day for 5 days. i was then told also to take pred for 2 days at 20 mg and then stop. i forgot to mention that i was off pred for two weeks until the cold flared up the sarcs. ever since then i've been good accept for a banging headache. if you know anything about the headache thing please let me know. i am scared to death of taking any other meds.

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WOW! 160mgs? I thought that was fatal. My doc just prescribed 60mg today because my left foot was swollen on top where you tie a shoelace knot. He said he never goes over 80mg. You wouldn't be in the Guiness Book of World records for going without sleep would you? :)
Dave

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I was on it for 1 1/2 years. The doc weaned me...40mg to 20 to 10 to 5. I wouldn't mess with them without the doc. My doc explained that while you're taking it, your body stops manufacturing its own. You have to wean to get your body producing it again. He watched to make sure I began producing my own again.

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Hi its not good to take them for a long time as they can cause your bones to crumble in time and cause other problems.But you say if you come off them it flares up again.Im not sure what you can do but they say to eat fruit and healthy helps then the flares may come down in time.good luck

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