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Predisone taper

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Posted 10/24/2013 8:13 PM (GMT 0)
I've been tapering off of Predisone for the past 6 months going from 60mgs down to 6.25mg. I am feeling like complete crap right now. I have extreme foot cramps, nausea, and a general feeling of unease. I know this is normal but is there anything I can do to ease the symptoms?
Posted 10/24/2013 8:55 PM (GMT 0)
I just came off from a peak of 55mgs successfully about a month and a half ago. Struggling with tapers/flares for about 2 years, trying to get off. The symptoms are going to be dreadful, but well worth no longer needing that horrid drug. I found marijuana to reduce any stomach pain, nausea, and give me an appetite. I never smoked more than a marginal dose, just enough to get the pain to subside.
Posted 10/24/2013 9:14 PM (GMT 0)
6 months and counting is way too long to be on prednisone. Are you doing some kind of maintenance now and after tapering off the pred? If pred doesn't work in 2 - 3 months then plan B needs to be figured out.
Posted 10/24/2013 9:29 PM (GMT 0)
I found healing through the SCD diet while on prednisone. While the prednisone masks symptoms, SCD clears up a lot of the illness by minimizing bad bacteria in the colon, while simultaneously repopulating with good flora. You can try to cook more chicken broths and specific carb foods to relax your intestines.
Posted 10/24/2013 9:58 PM (GMT 0)
Again, diet does not work for everyone
Posted 10/25/2013 3:23 AM (GMT 0)
It took me 7 months to get down from 40 mg.

What helped me was Curcumin and going very slowly. Under 10 mg, I went at the pace of reducing 1 mg every week or 10 days. If my symptoms returned, I'd go back up for a few days and try again. Even at the very end, I was alternating 1 mg every other day, because I wanted to be sure. My doctor said there's no real effect from 1 mg of pred. But that wasn't true for my system.

I also used suggestions from this site for licorice tea and Celtic sea salt. I figured they couldn't hurt. If you search for those terms, you'll find the thread.

Good luck. Don't go too quickly or you could end up having to go back to 20 mg and start over from there.
Posted 10/25/2013 11:19 AM (GMT 0)
It took me over a year to get off of oral steroids. I just had to tough out some really bad days, but eventually I was finally able to do it, thanks to finally having a well managed Imuran dosage. I am not perfect - still taking steroid enemas - but I'm almost four months off of oral steroids now, and I'm SO happy about it.
Posted 10/25/2013 2:58 PM (GMT 0)
I have been on prednisone since April. Have tried weening off several times. Every time I get to 20mg I have horrible cramping that nothing seems to help. I always end up back to at least 30mg. This past time I got down to 20mg and stayed there for 2 weeks. Last week I dropped to 10mg. Oh the horrible cramping was back full force. After a week of hardly being able to walk or touch my stomach I went back up to 30mg. I don't know how I am going to get off them. I have no side effects from them so I am not too worried
Posted 10/25/2013 3:04 PM (GMT 0)
Well, cramps, nausea, and a general feeling of unease are all symptoms of prednisone withdrawal. Tell us more about your tapering regime: tapering by how many mgs, and how often (e.g., dropping by 2.5 mgs every two weeks)?

The other thing this could be is adrenal fatigue. If you, like me, have been on prednisone for a long time then your adrenal glands have been on vacation for that time. Your adrenals produce a natural steroid in the range of 7.5-12mgs on a daily basis, but shut off while on dosages of pred above that natural level. As you slowly taper off of pred your adrenals need to wake up again, and restart production of your own natural steroids. If your adrenals are NOT waking up then guess what same symptoms as you describe: cramps, nausea, and a general feeling of unease.

There are some techniques to help wake up one's adrenals, as you get below 10mgs (e.g., take 7.5mgs of pred one day, 10 mgs the next, 7.5mgs the next, and so forth). And others as well.
Posted 10/25/2013 5:01 PM (GMT 0)
what are the other techniques? I've been tapering by 1.25mgs every 7 days. down to 6.25 right now and I feel nauseaus, weak, tired, crampy, and moody. I feel really uneasy. Also, I used to be extremely strong (over 1000lbs total in my big 3). I stopped working out for the past 4 months due to the UC and got back to it this week. I am beyond weak and have DOMS in my thighs that is absolutely crazy. I just want to feel normal and stop pooping all day.
Posted 10/25/2013 7:28 PM (GMT 0)
My tapering is done by 10mg at a time. 30mg for 7 days, 20mg for 7 days, 10mg for 7 days. I have done this several times. My stomach cramps so bad he sends me back to 30mg.
Posted 10/25/2013 7:29 PM (GMT 0)
It's amazing what an anti nausea and 2 tylenol will do for you. I feel better right now. That and a jim beam and coke...

dinner tonight is rice and chicken. excitement!
Posted 10/25/2013 9:17 PM (GMT 0)
So weird. I only get predisone munchies on low doses. Just killed two bagels and some frozen yogurt.
Posted 10/26/2013 12:28 AM (GMT 0)
Now you are talking!

rguyer said...
It's amazing what an anti nausea and 2 tylenol will do for you. I feel better right now. That and a jim beam and coke...

dinner tonight is rice and chicken. excitement!

Posted 10/26/2013 12:39 AM (GMT 0)
Have you had the levels checked for 6mp? It took me a long time to be able to successfully taper off pred but eventually with 6mp, I was able to do so and I've been in a good remission for a long time. I was on pred for way too long too, nothing else helped my symptoms. i tried all the diet and supplement stuff without success. I think reducing salt is good for puffiness and water retention, eating potassium may help with cramps
Posted 10/26/2013 1:06 AM (GMT 0)
I can't take the 6mp. I tried that in June and it messed up my liver. I spent 4 weeks in the hospital and almost died because my liver was toxic and ready to shut down. It was a bad time.
Posted 10/26/2013 8:13 AM (GMT 0)
Just a quick question, you all seem to be on oral steroids for a very long time. Is this normal? I was in hospital last week with a flare up (bad cramping, blood, not eating etc) and they gave me just 6 days worth (tapering from 30mg to 5). I had to go to the GP who said that wasn't enough (symptoms returning already) so gave me another 7 days (30mg).

I really don't do well with the steroids but is this something that may go on for a while then?

Im still getting used to whats 'normal' so forgive me if its a stupid question!
Posted 10/26/2013 12:22 PM (GMT 0)
UC is an autoimmune disease where your body's immune system has run amuck and begins attacking your colon or something in your colon, causing inflammation. Steroids can halt this attack while you take them, giving your colon time to heal. Unfortunately, the steroids do not cure your disease, all they do is give your colon time to heal while you are on the steroids. Once you taper down to low doses or completely off the steroids, your body's immune system will begin the attack all over again. The hope is that the steroids will give your colon time to heal and then when you taper down or off, hopefully your maintenance strategy (such as Asacol, etc.) will keep you in remission once you are off the steroids. If this actually works then you would continue doing your maintenance strategy forever because, if you were to stop, your immune system will attack you all over again and you will be back to square one.

You need to take the steroids for a long enough time and a high enough dose to heal your colon. If you come off the steroids too soon before your colon is healed, you don't have a chance of reaching remission. Taking them for just 7-14 days is ridiculous. They cannot heal your colon in such a short time. Most people are on steroids for a couple of months to achieve this. You cannot be on steroids for too long of a period or it will do damage, sometimes permanent, to your health in many different ways. Many become what they call "steroid dependent", meaning that every time they try coming off the steroids they get worse and they continue taking them for many months or even years. This is actually very bad and should never really be done. If the steroids haven't done the job they were supposed to do then they should be tapered off and another approach should be done. The answer to your question is your doctors have not put you on steroids for a long enough time and many of the doctors of posters here have kept their patients on steroids for far too long.
Posted 10/26/2013 1:22 PM (GMT 0)
I did not get steroids until I was hospitalized with severe pancolitis. That was my initial diagnosis of UC, even though I'd been sick and worsening for over a year at that point. I left the hospital with 40mg of oral prednisone, which we tried to taper, but the taper was faster than the azathioprine build up. I then had to go off of aza and onto Remicade. None of the support meds were working either, and the only control I had at all was prednisone.

I wound up back on 60mg of prednisone and was sent off to an IBD Specialist this March. She got me off of oral steroids as quickly as she could, but it took four months. She's still adjusting my dosages of Imuran and Remicade. I'm still not able to discontinue steroid enemas.

Without that year of steroids, I could not have functioned. I worked through all of it, in addition to taking care of my family and house. I cannot just take off a few months while we wait for Imuran to work. If support meds don't function correctly, or have a long lead time, there isn't a whole lot else an IBD patient can do.

I still have prednisone in my medicine cabinet, and I won't hesitate to go back on it if necessary.
Posted 10/26/2013 9:49 PM (GMT 0)
Gary..my wife had UC since 2003 so I do know what your saying. I just wanted to say thank you for giving advices to people on this forum. much of what your saying is on the mark and again thank you.
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