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Natural Supps and Tapering Prednisone

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Posted 5/27/2015 1:11 AM (GMT 0)
Has anyone had any luck with any natural supplements assisting them with coming off prednisone? I've seen licorice? I have tried 3 times and every time I flare again.

My Dr is hesitant to put me on Imuran or anything like it for some reason? Not that I want another prescription and possible side effects.

I'm wondering what I can try or what has worked for others. Even if it is a prescrption what was it? Like many others I'm tired of prednisone.

I appreciate the input!

Post Edited (mrotto) : 5/26/2015 7:21:08 PM (GMT-6)

Posted 5/27/2015 4:01 AM (GMT 0)
Curcumin. See my signature.

Once I figured out that I need a very large dose of curcumin to get out of my flare, and went up to 6 GRAMS per day, I improved very quickly. I managed to get off prednisone in seven weeks and I had started at 50 mg/day.

It's important that you get a good brand - and cooking with turmeric isn't going to get enough of the active ingredient into your system. Start with one or two capsules for a day or two to make sure curcumin agrees with you.

There are peer-reviewed studies showing that curcumin can help you get out of a flare. I don't have time to link to them right now but you can search pubmed for curcumin+colitis+remission.
Posted 5/27/2015 4:21 AM (GMT 0)
So you were able to use that until you were off the prednisone and then stopped taking that as well?
Posted 5/27/2015 11:59 AM (GMT 0)
I still take 3 grams per day of curcumin as my maintenance drug because I'm intolerant to all mesalamines. I wish I weren't since I think those are the best first line treatments (very effective and no dangerous side effects). I would be on them instead if I had a choice.

I do think' literature supports the idea that curcumin is a good supplement for anyone to take. My husband takes 1 gram a day even though he does not have UC.

I forgot to mention that I also used hydrocortisone enemas when I was coming out of that flare. They were just as important as the curcumin. Is strongly believe that everybody should use rectals.
Posted 5/27/2015 12:50 PM (GMT 0)
Please look at the resources thread at the top of the page. Are you taking any mega dose probiotics such as VSL? VSL is probably the most well known and studied probiotic for IBD. Many here have success taking at least 100 billion cfu's per day of various probiotics. Some can actually make you worse though as every UC case is very individual. What works in one can make others worse so a lot of trial and error is involved. It certainly doesn't look like your current game plan is working.
Posted 5/27/2015 3:46 PM (GMT 0)
kiptyn,

Do you take all 6g at once?
Posted 5/27/2015 4:48 PM (GMT 0)
I haven't tried the following coming off Pred (I think some/all of these have helped to keep me *off* Pred...) but they have produced noticeable improvements for me...

***Repost/edit from another thread***

1) You might want to become familiar with Pubmed - the national database of medical research papers (covering UC and everything else - keyword searching is pretty basic and online help is available if necessary).

http://www.ncbi.nlm.nih.gov/pubmed/

A major problem with starting/taking multiple meds concurrently is figuring out which med may be causing which side effect (or having no effect at all).

2) Inexpensive, easily accessible OTC options that have helped me personally (but UC is a *very* idiosyncratic disease - try each one at a time in order to clarify cause and effect) include -

a) Melatonin (rarely known by gastros - I find the Walmart 1mg dose (x4) with B6 to be most effective) -
http://www.ncbi.nlm.nih.gov/pubmed/24247651
http://www.ncbi.nlm.nih.gov/pubmed/23975342
http://www.ncbi.nlm.nih.gov/pubmed/23727938
http://www.ncbi.nlm.nih.gov/pubmed/21893693
http://www.ncbi.nlm.nih.gov/pubmed/20676767
http://www.ncbi.nlm.nih.gov/pubmed/18626968
http://www.ncbi.nlm.nih.gov/pubmed/17439553
http://www.ncbi.nlm.nih.gov/pubmed/16192667

(The Walmart 1mg with B6 may no longer be available...I have had to switch to the Natrol 1mg with B6...seems more or less as good)

b) Psyllium (active ingredient in Metamucil, etc.) -
http://www.ncbi.nlm.nih.gov/pubmed/17329047
http://www.ncbi.nlm.nih.gov/pubmed/14512034
http://www.ncbi.nlm.nih.gov/pubmed/10022641

c) EGCG (Component/extract of green tea - rarely known by gastros) -
http://www.ncbi.nlm.nih.gov/pubmed/25261409
http://www.ncbi.nlm.nih.gov/pubmed/23761791
http://www.ncbi.nlm.nih.gov/pubmed/22409325
http://www.ncbi.nlm.nih.gov/pubmed/22325177
http://www.ncbi.nlm.nih.gov/pubmed/18325726
http://www.ncbi.nlm.nih.gov/pubmed/18022615

d) Gingko Biloba (again, almost unknown to typical front line gastro) -
http://www.ncbi.nlm.nih.gov/pubmed/18567620
http://www.ncbi.nlm.nih.gov/pubmed/17392580
http://www.ncbi.nlm.nih.gov/pubmed/16458529

Each of these (very surprisingly) has worked for me to a degree comparable to Asacol/mesalamine.

UC is very idiosyncratic but these options may be worth consideration if you are getting dissatisfied with the "standard" meds prescribed by your average gastro.

**I have never used these in the context of coming off Pred**

For this reason, you might want to discuss with your Gastro...but bring along the pubmed print outs - otherwise your average gastro will just poop on any OTC products...
Posted 5/27/2015 5:21 PM (GMT 0)
Two things worked for me coming off pred:

The first was Qing Dai (a dirt cheap Chinese antioxidant powder, look it up for UC on PubMed).

The second was temporary diet mods. I increase resistant starches and removed cheese & wheat-based products for a while until I felt like things were back to normal again.

You could try that.
Posted 5/28/2015 1:53 AM (GMT 0)
For every day while in remissions, I take my 3 gram dose all at once with dinner. I always take it with food and there should be some sort of fat in the meal to help with absorption.

When I take the 6 grams during a flare I split it into two doses of 3 grams each. I take 3 g with breakfast and 3 g with dinner.
Posted 5/28/2015 4:25 AM (GMT 0)
I would go for the 6mp/imuran. I doubt you're going to successfully get your UC into remission with licorice. That's the problem, you're not controlling your UC.
Posted 5/28/2015 5:12 AM (GMT 0)
Real licorice can cause major health issues, including death. They make the DGL version for this reason but it lacks the ingredient that may help so it often tends to be worthless while the real version is too dangerous.
Posted 5/28/2015 11:23 AM (GMT 0)

notsosicklygirl said...
I would go for the 6mp/imuran. I doubt you're going to successfully get your UC into remission with licorice. That's the problem, you're not controlling your UC.

Ditto.
Posted 5/28/2015 2:02 PM (GMT 0)
I left a message for the Dr and he called and left a message yesterday while I was at work and mentioned possibly going to weekly injections with the humira. Do you think id still need the other meds to get off prednisone? I am assuming yes?
Posted 5/28/2015 2:26 PM (GMT 0)
If humira isn't doing anything for you, more of it may not do anything either. If you're losing resopnse quickly, you may have good luck with weekly shots. I would definitely add rectal meds. it's a small inconvenience, and if it keeps you in remission, it's worth it.
Posted 5/28/2015 2:31 PM (GMT 0)
Yeah I'm currently using rowasa at night. It's always helped in the past. Sometime I've been able to use it instead of prednisone, unfortunately with my current career I cant chance it or take the longer response time for control as I don't have easy access to a bathroom for 10 hours.
Posted 5/28/2015 3:32 PM (GMT 0)
Oh my, no access to a bathroom for 10 hours? A uc patient's worst nightmare... What do you do for work?

I'm an office worker with a bathroom always within a short sprint of my desk.

Try Imodium to reduce urgency?
Posted 5/28/2015 5:11 PM (GMT 0)
I'm in law enforcement. So I can get to one, but it could be a while depending on where I'm at or if I'm on a call.

Yeah I've used Imodium. It somewhat helps but only a few hours and if I take more it makes me super gassy. I used to just not eat before or during shifts but the last month I've lived like a normal person and needed no restroom for the entire shift except to pee
Posted 5/28/2015 5:25 PM (GMT 0)
I use homemade nopal water along with my asacol and it has helped me a lot. Scope a few weeks ago shows only very mild inflammation in patches now. I generally have 1-2 BMs /day, always formed and haven't seen any blood since just after the scope (probably from the biopsies). Use the search feature for many posts about nopal. It's cheap, safe and easy to make. Basically it's one nopal pad cut up in 2 qts of water and left there to soak while the water is consumed. Read the threads for more detail.
Posted 5/28/2015 5:30 PM (GMT 0)
Here are some Nopal threads

www.healingwell.com/community/default.aspx?f=38&m=3282660

www.healingwell.com/community/default.aspx?f=38&m=3306068

www.healingwell.com/community/default.aspx?f=38&m=3316680
Posted 5/28/2015 5:35 PM (GMT 0)
www.healingwell.com/community/default.aspx?f=38&m=3331470
Posted 5/28/2015 7:12 PM (GMT 0)
I was actually drinking a prickly pear cactus drink for a while during my last big flare on xmas eve. Didn't understand that it was actually good for symptoms just bought it cause I drank a ton of cactus juice while in Mexico and I knew I felt great down there so thought I'd try it here. Even though I'm sure I felt great due to the fact I was also on my honeymoon sitting on a beach with no stress. It seemed to help for sure but not sure it is effective enough to use alone. Seemed to be something that calmed down the flare a bit but didn't resolve it.
Posted 5/28/2015 7:48 PM (GMT 0)
It was pretty slow acting for me. I wasn't in a horrible flare so I wasn't real impatient about it working fast. I started noticing firmer stools and less frequency within a few days, but it took a couple months before I felt "normal" and stopped seeing blood except only very infrequently. I see my GI next week who was pushing me to go on Humira before I went for a 2nd opinion and had the colonoscopy on 5/4. From what I could see from the pictures and the written results the inflammation now is much improved from last October so I would like to just continue to do what I am doing -- 6 asacol/day and 20-24 oz of homemade nopal water. I am convinced the nopal is what has helped since I have been on asacol for a long time and it wasn't quite enough. I don't think I would ever stop taking the asacol though. I don't think nopal alone would be enough.
Posted 5/28/2015 7:52 PM (GMT 0)
Where do you purchase it to make it your self? The bottled stuff I was buying was pretty expensive.
Posted 5/28/2015 8:12 PM (GMT 0)
I get my pads at a Mexican grocery store. I usually buy them already cleaned so I don't have to mess with the thorns. I get a pound of cleaned whole pads or already cut up for $2.99 and it lasts me 2 weeks. I use 1/4 pound for 2 qts of water. If the pieces are already cut up I just throw them in the water, if I get the pads I cut them into pieces myself. Soak overnight in the refrigerator, leave everything in the water and then toss it once you drink all the water. The water doesn't have much taste -- maybe faintly of cucumbers. Some people have said the water gets very thick for them but I have found that my recipe it gets only slightly thicker than water and I find it refreshing to drink. I drink 16 oz in the AM and 8 oz in the evening.

If you don't know where there is a Mexican grocery store near you, google "Mexican grocery store in [your city name]" and something should come up. Nopales (what the people at my store call nopal) is a staple in Mexican cooking and they always have some. Though a couple times they were out of the cleaned pads and I had to buy the ones with thorns -- those are cheaper (1.99/pound) but a hassle to clean.
Posted 5/28/2015 8:52 PM (GMT 0)
So you just soak them in water overnight?
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