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Those who had trouble tapering off PREDNISONE how did you overcome it?

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Posted 4/2/2012 11:36 PM (GMT 0)
Just to update, I had my second remicade infusion on march 27th and am seeing improvements! I am not in remission yet some days are worse than others, but I can definitely say the remicade is working. I cant wait for my next infusion, Im actually worried its too far away ( april 23rd ). But hopefully Ill be fine until then.

I am currently at 18mg of prednisone trying to get down to 15. I am still worried although the remicade is helping my symptoms that tapering off the pred will cause my symptoms to return. I am tired of the side effects of prednisone, my hands have been shaking a lot lately and joints are hurting but cant live without it.
Posted 4/3/2012 2:15 AM (GMT 0)
That's great news despi. I hope you're able to taper off pred quickly and that you stay stable for a very long time.
Posted 4/3/2012 3:25 PM (GMT 0)
I hope that you have success with remicade. In my experience I was prednisone dependent. I thought remicade was working, but then after about two weeks of being off prednisone I started to flare again. I was in Las Vegas at the time. Let me tell you being on an airplane is the worst possible situation when you have no control over your BMs. Same thing happened with Humira, but only this time I was on a camping trip. Another bad situation. I've never gone to the bathroom so many times in the woods before lol.

That was the final straw. I knew prednisone was killing my body and I wanted to enjoy life again. I opted for surgery. I am now medication free and symptom free. I no longer find myself asking, "Where are the bathrooms?"
Posted 4/3/2012 3:41 PM (GMT 0)
I forgot to add, one thing I believe to help me a bit when tapering was having a few cups of Licorice tea. Licorice naturally stimulates the adrenal glands which awakens your body's natural cortisol.

If you plan on doing this, the herb, licorice, is very strong and pungent.
Posted 4/4/2012 10:05 PM (GMT 0)
I have been on Pred since July last year. I just got off. Day 4 pred free! Fingers crossed! I tried a few times to get off and always had trouble under 10 mg as well. Here is what helped me. When I went under 10 instead of waiting for too many symptoms and having to go back up to 40mg I started at the slightest twinge going back up to the last amount I was at. At one point that was 10 mg and another 7.5mg. That really helped me.

The other things that helped were I also drank licorice root tea like steriofidelic. I tried to drink it at the times it your bodies cycles usually need the pred by. 9 am and 6 pm.

The other thing I did was a friend who went to a Nutropath about adrenal fatigue and gave me her docs suggestions. I didn't want to mess with supplements or weird things, but these were pretty normal suggestions. Eat 3 Brazil nuts a day, eat at least 1 serving of wheat germ a day, and eating celtic sea salt (1/4 tsp). Each thing has vitamins and minerals that are essential for adrenal health. I found these things to really help me. That is assuming you can eat these items at this time.

Also greatly limited sugar and increased my intake of anti-inflammatory foods during this time.
Posted 4/5/2012 7:08 AM (GMT 0)
Here is copy & paste of previous postings about my experience with tapering off prednisone - hope it helps. Wish you the best.

Posted 9/16/2011 2:41 AM (GMT -8)
Hi CGK,

My use of prednisone began mid-Nov 2007. The dose was rapidly increased from 20 mg up to 40 mg pred daily and stayed at that dose through March 2008. So I was on 40 mg pred for four months.

The first attempt to taper off was way too fast. As soon as I was completely off pred the symptoms of UC came roaring back. Abruptly, I was having severe migraines, nausea, bone pain, fatigue, weakness and lethargy. GI doc attributed these symptoms to the immuran I'd started at the time of beginning the pred taper. After two months in bed - my PCP listened to the explanation in the IBD book that I'd brought in. He called an endocrinologist who agreed with my suspicion - and guided the snail-paced taper described in my previous post.
Ciao, Denny Rae

Posted 9/14/2011 4:47 AM (GMT -8)
Prescribers fail to explain the risk of developing Adrenal Insufficiency as a result of having taken corticosteroids, e.g., prednisone.

Migraine headaches, bone pain, and extreme lethargy were the physical symptoms that had me down for two years. Chronic depression was also exacerbated.

The disabling symptoms of adrenal insufficiency are not due to "withdrawal" from prednisone. Rather, it is the failure (insufficiency) of the adrenal glands to produce the all-essential cortisol. Prednisone is far more potent than it's natural analogue, cortisol. Symptoms of insufficiency can emerge during and after tapering off prednisone, and vary in severity.

Taking prednisone overrides your natural production of cortisol. Developing adrenal insufficiency is more likely after taking high doses (~40 mg) for long periods (~several weeks). A rapid taper off of prednisone (of dose and schedule) hastens the emergence and severity of the symptoms.

In my case it took two months in bed to figure it out by re-reading the chapter on medications in an IBD specialist's book. I took the book to my PCP who promptly stepped out to call an endocrinologist. I was put back on a dose of prednisone just above where I first developed symptoms of insufficiency (~15 mg). The taper was unbelievably slow (reduction by 1-1.5 mg every 1-3 months). Symptoms re-emerged at 5 milligrams. So the dose was bumped up again; resetting the taper at smaller dose reductions over longer periods. At 1-2 milligrams of prednisone, I was switched to cortisone and continued the slow taper. Every three months I underwent adrenal challenge tests* to evaluate adrenal functioning and determine if & how much to taper.

*Adrenal challenge testing included; baseline blood draw, injection of cortisol stimulating hormone, followed by two more timed blood draws to measure cortisol and ACTH response.

In total it took two years and three taper attempts to get off steroids and restore adequate adrenal function. It then took another 6 months and two attempts to taper off of opiates that were controlling the bone pain and frequent migraines.

I have vowed to never take any steroid unless it given down an ET tube as a life saving measure.

Hope this information helps.
Ciao
Posted 8/27/2013 3:30 PM (GMT 0)
I have been on 5mg. of Prednisone for about 10years. It helps a variety of my medical problems. Arthritis, colitis, and chronic asthma, and IBS being the main ones. I have tried to taper twice and when I get down to 2mg., the trouble starts. Several episodes of colitis and of course the arthritic pain and I feel SO sick!
There is a new whipper snapper young doctor at my pulmonary doctor's off and she wants me off Prednisone. Not good for me, brittle bones. ( my bones are fine....tested every year with bone density tests.). She says that everything she does is OK'd with my doctor. The last time I saw him he said to stay on the Prednisone and my puffer. Now this PA who is trying to make a name for herself wants it changed! I feel it is very low dose and IT WORKS! Leave it alone! Anyways, my primary doctor refuses to do a test for cortisol. He feels that I can just stop taking it! WOW! So now I need some 1mg. tablets to taper. 5mg.'s cannot be broken in half as they are not scored. Got to call the whipper snapper and see if she is agreeable to that. Any ideas?? Help!
Posted 8/27/2013 3:49 PM (GMT 0)
In the end it is entirely up to you. You take whatever medications you want to take, at whatever dosages you want to take them. You cannot let a dr make a decision for you and blindly go along, especially one that may hurt you. If it works then don't fix it; I say.
Posted 8/27/2013 4:15 PM (GMT 0)
i was on pred from dec 2012 to jun 2013. everytime i went down to 15 mg all my symptoms came back. they had to start me on remicade in april 2013. at first they were making me taper 5mg every week but after they put me back up to 30mg and started remicade i was tappering 5mg every 2 weeks. i took me up to my 5th infusion for me to stop seeing blood. i have my next infusion on the 11th of sept and since my last infusion ive seen blood only once.

Posted 8/27/2013 4:32 PM (GMT 0)
Is your previous doctor who prescribed the prednisone still in the picture? I would try to have them back you up. The hell with what one doctor wants. If you can find a doctor to prescribe 5mgs of prednisone forever then do it. One doctor can't usually override another doctor. I think you are making a mistake by changing what has worked all this time, not only for uc, but for your other conditions as well. Don't taper!!!!
Posted 8/28/2013 10:04 PM (GMT 0)
I hate prednisone- the insomnia, depression coming off of it. I went on Imuran and have been on it for 17 years, the last 11 or so only 50 mg/day which is fairly low dose. The prednisone caused osteoporosis in my spine but with calcium and weight training I was able to get back to normal for my age. So, if you are at risk of osteoporosis (I was in my early/mid 30's, tall, thin, white chic and exercise daily) it was worth taking the calcium just for THAT reason. The imuran and asacol for the most part kept me in "remission" though always had some mild symptoms..was doing well but now flaring, not sure why but the last colonoscopy did a number on me. Good luck!
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