Getting off Prednisone after extended use | Arthritis Information

 

Has anybody here been able to successfully get off of Prednisone after being on it continuously for over a year? I've been taking it for almost two years at doses between 5 and 10mg, except for a brief period last year where I had a massive flare, and my doctor put me on 20mg for two weeks. I'm now down to 6.5mg a day, and tapering by .5mg every two weeks. I'm also taking Humira (started 5 months ago, injection every two weeks) and 7.5mg of MTX. The Humira has been absolutely miraculous, I'm virtually symptom free now, and I figure this may be the best chance I ever have to get off of Prednisone. Other than an occasional twinge, I haven't had any problems tapering so far, but am fully prepared to meet resistance from my body at 5mg. My goal is to get off of Prednisone by Christmas. If I'm successful, it'll definitely be the best present I get this year.
treefrog00139293.187962963Wow!, congratulations!, your plan sounds perfect to me. I'm real intersted in your success with Humira,mtx & 'the pred'. I take a lot more medication than you do, and am slowly feeling better. I tried to drop pred. totally, and ended up having to go back up, now down to 5mgs. my doctor said he didn't say get off of it totally! I thought he had said that. Mine is an unusual case (I've been taking it 3 months) and I hope to reduce everything I'm taking by Christmas, too. You'll know if you need the pred.....I totally understand wanting off of it! LyndaMy biggest fear is that my Adrenal glands have shriveled to the size of peas and shut down, which means I'd probably never be able to get off of Prednisone completely. I've never had any problems with Prednisone, but I absolutely HATE being tied down to the stuff. I really like my Rheumatologist, but in retrospect, I wish he had been more forceful with regard to not letting me stay on Prednisone for so long that my body became dependent on it. Hi, I hope tht isn't the case. Others here will know. LyndaHi there, was on 35 mg. of Pred for 3 years and have been tapering for the last 6 months.  I was able to go to 7.5 mg but when I tried to get to 5 mg. I became ill with all the signs and symptoms of adrenal shutdown.  Went back up to 7.5 mg. and immediately started to feel better.  My RD said to stay at 7.5mg (that's about the amount our bodies manufactures on it's own) and maybe taper 1/2 mg. later on.  I'm ok with 7.5 mg. and will stay there forever if I have to.  I was really ill with the shutdown and don't wish to ever experience that one again. Good luck and I think you'll make it by Christmas.  Good present for you.  Linda Hi Linda!! The fact that I've been able to drop below the magic 7.5mg threshold without flaring (so far) gives me hope. My next step will be to quit splitting my dose between morning & evening, and to start taking it all at once, probably in the evening. My Rheumy says that that's the ticket to getting my Adrenal glands to start pulling their load again. treefrog00139293.320462963

I've been trying to taper down as well. Am currently on 5mg from 7.5 mg daily (had been at 7.5mg about 6 months and higher doses before that). I feel terrible...but honestly....no more terrible than when on 7.5mg. I am trying stronger doses of other meds to get off the pred. If I feel no worse than I might as well take the 5mg? I don't know....

My mom was on prednisone for 16 years and is currently completely off it and has been for the past 2 years. So she is a success story. And she was on doses as high as 80 mg at some points as she had a severe case of multiple illnesses.

Good luck

Wow Sarah, it's definitely cool to hear that your Mom was able to get off of Prednisone after being on it for so many years. That means there's hope for folks like us!!!

The last time I tried to get below 5mg, I just kept flaring like crazy. I'm hoping that the fact that I'm on both Humira and Methotrexate now will help me get over that hump this time.
Treefrog you sound like my pred twin. I've been on it for about 2 years, between 5 and 10 mgs daily, after an initial high dose. Good luck with coming off it totally. I've been paranoid about my adrenal glands also.

Can I hijack and ask what sorts of symptoms do you get if you try to come off pred too quickly? (Sorry Treefrog! For hijacking your thread) Hi Orion7!! The primary symptom of coming off pred too quickly (for someone with RA) is monster flares. If you've been on prednisone long enough that your adrenal glands have completely stopped making Cortisol, you can develop what's called Adrenal Insufficiency. Cortisol is the primary hormone the body uses to deal with stress, as well as inflammation. If you're suddenly put in a stressful situation while you're in a state of Adrenal Insufficiency, you can become very seriously ill, and even die. That's why you can never stop taking Pred cold turkey if you've been on it for a while. You have to give your Adrenals a chance to wake up and start producing natural Cortisol again.

If I ever manage to get off of Prednisone, I swear I'll never let myself become dependent on it again.

Here's a nice link on Adrenal Insufficiency (Addison's disease):
http://endocrine.niddk.nih.gov/pubs/addison/addison.htm
treefrog00139293.6577430556I just had a ACTH test ? DR said my adrenals were not working correxctly.low Cortisol. How do I get them back?? I'm so tired and weak I can hardly type right now. Very Jittery alsoThose are questions for your doctor and the sooner they get answered the better for you.  When is your next appointment?  Soon, I hope.  I know how you feel and I was sicker with the adrenal problems than I've ever been in my life.  I just wanted to close my eyes and never open them again.......and for anyone that knows me - that's the worst.  The answer for me was to stay at 7.5 mg. and to start to taper after I've recovered from the TKR.  Unfortunately, I've had to increase to 20 mg. of Pred. due to a post op flare.  Will start tapering again in a month.  I may be on 7.5 mg. for the rest of my life, we'll see.  LindyThanks Lin. I have had the RA fatique many times but this.Holy Crap...I'm DONE. All my body esp the muscles feel shakey. How long till you got better and what was your treatment? Yikes about the low Cortisol!! Are you currently taking Prednisone? If you are, and it's less than 7.5 mg a day, I hope your doctor bumped up your dose.

Late last year I lost 20 pounds in less than three months. I'm a pretty skinny guy to begin with, and going from 162 to 142 that quickly was scary. I totally lost my appetite, was nauseous  most of the time, and had no energy at all, and was weak as a kitten. I saw my Rheumy after I'd lost 5 pounds, and he wasn't too concerned. When I saw him after I'd lost 20 pounds (and looked like a skeleton), he was VERY concerned. He put me on 20mg of Prednisone daily (I'd been taking 5), and my appetite returned almost immediately. He also put me on Humira, which has been unbelievable. He never did tell me specifically what caused me to become so sick, but I strongly suspect, based on what I've read the last couple of days, that my adrenals had stopped working. I'm surprised he didn't have me get an ACTH test. I guess he just knew from experience what the problem was. It took me six months to gain back my weight, and now I feel great.

Here's a link to some information on the ACTH test:
http://www.labtestsonline.org/understanding/analytes/acth/te st.html
It's got some really good stuff on the symptoms of low adrenal output.treefrog00139294.5835069444Wow, I havw a lot of the symptoms of Addison's.....I'm on 4mg Predlisone ( Medrol )

I felt better as soon as I went back to 7.5mg of Pred.  Took a couple of days to feel somewhat better and probably a couple of weeks to return to normal.   I don't think I've ever felt so bad in my life.  All consuming fatigue, nausea, back pain, and muscle weakness.  Call your RD or primary doctor.  Lindy

My adrenals are pretty much shut down as well from the steroid use.  I am also taking an adrenal supplement that I get from my pain clinic, its relatively cheap, something like a bottle.  You can also got iv infusions, like the meijers infusions that have minerals in them to help stimulate them but I had a nasty reaction after only 2 infusion so can't do them anymore. OK Thanks. Any other treatments or remedy's ????I was told by a doctor that it takes years and years of pred use to worry about your glands.I was on pred,for 15 years and I am now fully off it after "weaning"off it for many months.
I have lost a lot of weight and my face isnt "swollen"anymore Wow Agatha, it's great to know that it's possible to get off Prednisone after that many years!!! I guess there's hope for me after all. I'm just going to go real slow, and not push things. The big difference between now and the last time I tried to wean myself is that I'm taking Humira, and the inflammation markers (CRP & SED rate) in my bloodwork are almost down to zero. I'm hoping that makes the difference.
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