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Tapering off Pred--desperate for tips or tricks please

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Posted 11/10/2009 1:00 AM (GMT 0)
Hi Everyone!

I've been on 40 mg of Prednisone for almost 6 months now because of a stupid flare, and I just can't seem to get off of it. I've tried to taper MULTIPLE times, and every time I just get worse and have to go back up to 40. I've seriously been going down so slowly too--first I'll go to 37.5 mg per day, and then to 35 a week after taht, and so on. But my body just WON'T let me do it. It's killing me, because my GI just wants me off of it. I want to be off of it too, obviously, but I don't want to be crapping blood or having MORE diarrhea than I'm already having.

I just recently went down to 37.5 mg, and have been at that dose for the last 3 days...this morning, bam! Tons of diarrhea, blood, and pain. GREAT! I am DETERMINED to get off these steroids though, and would love any tricks or tips you guys have. I am trying to eat safe foods (Ensure and cottage cheese and jello and crackers), and etc, but I don't know what else to do.

Any suggestions? I'm on Align as of last week, one pill a day...should I double up? Would taking Immodium or Lomotil help? Tylenol to reduce inflammation? Any supplements? I'm baffled. I am at my wits' end. I'm so emotionally drained of this flare. eyes Thank you all in advance!

Posted 11/10/2009 2:06 AM (GMT 0)
Hi

I am also tryimg to taper off steroids following a severe flare.  I was in hospital on IV steroids and came out on 37.5 mg pred, and started to flare up again after a few days.  Bumped up to 50mg, no change, bumped up to 75mg, things started to settle.  Was still bleeding a little though.  Decided to introduce psyllium powder after reading about how much it has helped some people on here, and withing 24 hours, no more bleeding or diahrea.  Have managed to get down to 50mg prednisolone now without any flaring of symptoms, so I am being cautiously optomistic that I can continue to taper.

As far as diet goes, most people seem to recommend avoiding sugary foods.  I know that I have been drinking sustagen (similar to ensure) because I really needed to gain some weight as I am in the middle of a pregnancy, but the foods that I have found really helpful (again, information from others on this site) is fresh salmon and sweet potato, scrambled eggs, plain yoghurt, almond milk.  There are quite a few posts detailing anti-inflammatory foods, and I have found them very helpful.

Good luck.  Take some time to read through the various posts on the forum and you will find tons of useful information!

amygrace

 

Posted 11/10/2009 2:13 AM (GMT 0)

Thank you, amygrace!

Trust me, I've been reading throught just about every post on here. Your story is very inspiring. Where can you get psyllium powder? The grocery store? How much do you take? I've heard of people using it but have never looked into it.

Posted 11/10/2009 2:16 AM (GMT 0)
Honestly?
I'd be consulting a surgeon. It looks as if you've exhausted all of the medication options.
Good luck.
Posted 11/10/2009 2:18 AM (GMT 0)
I would double the probiotics and eat more yogurt, myself....
And, as I said on some post earlier, it sounds very New Age, but I sat for 10 minutes a day and visualized health in my body, pictured my adrenal glands taking over and producing "good guys" to fight off the "bad guys" (sort of like Pacman)... and I believe it helped.
I was working as an HIV counselor at the time, and ran a support group there, and we'd had a speaker give a talk on visualization as a method for healing, so I gave it a try.
But you're sure on the right track with the slow taper!
I'll be thinking of you both and wishing you the best.
Posted 11/10/2009 2:27 AM (GMT 0)
I don't think surgery is really an option for me at this point. Every scope I have seems to show just mild inflammation. I just happen to have lots of diarrhea. My doctors have been wavering between Ulcerative Colitis and Crohn's and now recently are saying that perhaps I also have IBS-d. There aren't any super diseased areas of bowel they could even be removed or anything...which I guess is a good thing, for now.

Posted 11/10/2009 2:52 AM (GMT 0)
80sChick, try the Specific Carbohydrate Diet, (google it up). It didn't help me, but I personally know several people who claim to be "cured", (most had Crohn's, so maybe there is a relationship there). I also corresponded with another member who feels great on an antifungal diet for two weeks. Maybe you should try it too. Good luck!
Posted 11/10/2009 4:52 AM (GMT 0)
Wow, my thoughts and prayers are with you both, Chick and amy.

 

I'm (hopefully!!!!!!!) coming out of a flare and tapering off pred, too, but only at 15 right now.  I begged the doctor not to bump me up to 40 because it's so intolerable for me.  When I'm at that high a dose I'm honestly not sure its helping me and might even be making things worse. 

Have you tried any type of cortisone enemas?  Can your doctor up your Imuran?  

I do use Lomotil but at less than half the strength my doctor prescribed, because I cut them in half.  Half of one usually gives me a couple of hours without D even when I'm flaring.  It might give your colon just a tiny break and sometimes when you're flaring that little break can mean so much.

 

Thinking of you and hoping for the best.     

 

Posted 11/10/2009 5:25 AM (GMT 0)

Most super markets here (australia) carry psyllium husk powder in the health food section.  Certainly any health food store should have it.  People on here have recommended psyllium SEED powder, more so than the psyllium husk powder, but I couldn't get hold of it anywhere, and touch wood, the husk powder seems to be helping.  I only use a small amount because I was a bit worried about what effect it might have - didn't want to make anything worse!  The recommendation on the container is one teaspoon in a glass of water per day, and I probably use just under that. 

If you go to www.nutritiondata.com you will find the inflammation ratings for various foods.

Good luck, and thanks guys for the well-wishes!  Fingers crossed things are moving in the right direction for me at last!!

amygrace

Posted 11/10/2009 6:20 AM (GMT 0)
We found psyllium seeds at a local herb/health products store. I then ground them up as fine as possible in a very high powered blender. We give my daughter about a teaspoon in the morning and a teaspoon in the evening. She has done very well with the psyllium seed powder. We also encourage her to eat one or two packets of the metamucil wafers, which have psyllium husk. You can see from the signature below that we are trying everything that has shown at least anectdotal evidence of working with UC. They are not easy to grind up finely - we ground them a little at a time and then sifted the ground up powder to get the large pieces out and ground this again. My daughter takes the psyllium seed powder with VSL#3 mixed in apple sauce with cinnamon. This seems to the a very easy way to eat both VSL#3 and psyllium seed powder.
Posted 11/10/2009 11:57 AM (GMT 0)
I recently bought a couple of pounds of Psyllium seed powder from www.bulkherbstore.com/Psyllium-Seed-Powder. It took just a couple of days to arrive at my door and ran about $12.50 a pound after shipping charges. I thinking that the 2 pounds will last about 3 months.

I have been using the powder (teaspoon (7.5g) twice a day) for 7 days now and the amount of blood has decreased significantly. I'm also on 40mg pred so it might have finally been showing results. My previous pred experience is that it stopped my bleeding within two days but that didn't happen this time. Fortunately, it eliminated the intense abdominal pain and discomfort within a day so I didn't feel like I was on the verge of death.
Posted 11/10/2009 5:11 PM (GMT 0)
80s chick.

Looks like you've exhausted the pharmaceuticals and you are becoming dependent on the roids.

Along with staying on pred, which holds the flare-up back, I suggest looking at the alternative medicine side of healing. Do some research on ayurveda or chinese medicine and you'll be surprised about what you might find about you and the disease. It's worked for me even though I am still dependent on the drugs but I was in your spot not too long ago where pred was not working as it used to in previous flares. I've had to be patient and it's a work in progress but I have made some major adjustments to my lifestyle which includes diet and attitude and rest, etc. and I must say it is helping. I've just had to implement all of it with the meds.

Rethink also what you consider "safe" foods. The foods you listed are loaded with sugar and could very well hinder your gut from healing.

Keep up though and don't get discouraged. Just take some initiative to open other doors besides the ones the GIs give you...
Posted 11/10/2009 9:13 PM (GMT 0)
I am trying hard to revamp my diet. It is seeming that natural routes are probably a better idea. What kinds of foods would be better/ where can I look to get more information? I feel like I have been researching what kinds of foods are safe for so long and have been completely wrong!! shakehead
Posted 11/10/2009 9:47 PM (GMT 0)
80s chick.

I've been wrong many many times with the food because what I heard was good for one person wasn't good for me. So I've had to experiment a bunch with changing the dietary part of it. It's hard to tell sometimes what works and what doesn't but you gotta listen to your body. Don't know what your financial situation is but it's important to eat organically, unprocessed (meaning no Ensure), and as natural as possible. Raw and uncooked food isn't good right now especially in extreme flare-up.

If you are interested in checking out alternative routes. Start researching ayurvedic medicine. Google it. Ayurveda will mention the three doshas. Usually digestive disorders like ours are an imbalance in the pitta dosha but again different people manifest the disease differently with different reasons so you have to find which one you fit in. There'll be guidelines for what ought to be done with diet. But keep in mind, too, that your body is so off balance that even some of the "helpful" foods are hard to digest. There is a recipe for this dish called kitchari that is basically rice and yellow lentils with various spices and herbs that is so easy to digest. It's a food often given to people for cleanses and it balances all 3 of the doshas. It provides plenty of nutrients and tastes pretty good. I eat it a lot and I digest it really well. Sometimes I steam dark leafy green veggies with it or eat it with a couple eggs. In your case, you are probably anemic so you need some of that iron from the greens or animal protein, but again go organic.

You can also research anti-inflammatory diets. It'll say that omega 3 6 9 is important so a lot of wild salmon is another good protein. I guess I eat more good proteins right now then starches like white rice and forget about the refined sugars, caffeine, raw stuff, etc.

I can go on and on about diet and alternative stuff. I have spent soooo many hours on this and have been to the bottom of the barrel more than once/twice. But I'm learning that diet is only a small portion of the healing. There has to be this whole body overhaul to get yourself better. But it's up to you to help yourself. It's a learning process, all of this. It sucks I know. I feel for you because we're the same age ( I feel for everyone, yes) Let me know what you find out and I can try and help you more if you're into it...take care
Posted 11/10/2009 10:03 PM (GMT 0)

80sChick said...
I don't think surgery is really an option for me at this point. Every scope I have seems to show just mild inflammation. I just happen to have lots of diarrhea. My doctors have been wavering between Ulcerative Colitis and Crohn's and now recently are saying that perhaps I also have IBS-d. There aren't any super diseased areas of bowel they could even be removed or anything...which I guess is a good thing, for now.

If this is the case, then just ignore the colitis symptoms that you get when tapering off prednisone. Your body will produce less cortisol when you are on prednisone. That's why we aren't supposed to stop taking the medicine cold-turkey. It takes awhile for the body to adjust and start producing its own cortisol. The only way it will do so is if you have reduced your dosage for a certain period of time. Each time the medicine is reduced, the inflammation comes back, our bodies up their production of cortisol, which should help reduce the inflammation. Just give it time.
Posted 11/11/2009 7:56 PM (GMT 0)
When you get down to 10 mg of pred try decreasing by 1mg/month. My endocrinologist introduced me to the 1 mg tablets of pred and it allows us to taper even slower, but it works.

Julia
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