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Tapering off pred

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Ulcerative Colitis
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Posted 3/3/2015 3:25 PM (GMT 0)
So I have to say I have never felt so great as I did on 40mg and 35mg of prednisone. I have had extra energy and only going to the bathroom 1 to 2 times per day and it's been a dream just to function normally again. Unfortunately yesterday I noticed UC symptoms after tapering down to 30mg per day (for 2 whole days). I went 3 times and felt grumblings in my tummy. I know its not good to be on prednisone for a long time. I am suppose to taper every 10 days. How do people taper and deal with increasing symptoms? This sucks!
Posted 3/3/2015 3:37 PM (GMT 0)
There is one way - reduce the inflammation load.

Eat super clean - remove all sugar all sugar substitutes
Ease back on working out
Keep fiber of choice going
Keep maint med going
Licorice to stretch pred and natural cortisol
Qing Dai is studied to get people off prednisone by reducing inflammation
Psyllium seed powder to deploy SCFA butyrate into colon for healing
Curcumin for anti-inflammatory properties.
Taper gently below 10 as the body makes about 8mg per day 10/7.5/5.0/2.5 2.5 EOD
Posted 3/3/2015 3:45 PM (GMT 0)
If your uc symptoms start increasing as you start tapering prednisone then it is a huge, waving red warning flag. Something is wrong, contact your gastroenterologist. Your uc maintenance medications need to be sufficient in order to maintain your current quality of life and uc symptoms without prednisone. Continue dropping your prednisone dose and you will flare up again.

You need stronger uc maintenance medications.

i💩
Posted 3/3/2015 3:52 PM (GMT 0)
Okay I will have to talk with my GI then. I am eating extremely clean. I follow the SCD diet, which means I eat no sugar (or sugar substitutes) or grains, or starches. I already take curcumin. I am drinking chamomile tea and ginger tea. No coffee, no alcohol...all grass fed meat and organic veggies...UGH! How frustrating. Thank you for your responses.
Posted 3/3/2015 3:56 PM (GMT 0)
Possibly going upto 6 Asacol HD for 6 months or a year can tame things.
Posted 3/3/2015 4:18 PM (GMT 0)
maybe this >

"Possibly going upto 6 Asacol HD for 6 months or a year can tame things."

+

this >


"Eat super clean - remove all sugar all sugar substitutes
Ease back on working out
Keep fiber of choice going
Keep maint med going
Licorice to stretch pred and natural cortisol
Qing Dai is studied to get people off prednisone by reducing inflammation
Psyllium seed powder to deploy SCFA butyrate into colon for healing
Curcumin for anti-inflammatory properties.
Taper gently below 10 as the body makes about 8mg per day 10/7.5/5.0/2.5 2.5 EOD"

maybe =

happy tummy :-)
Posted 3/3/2015 4:18 PM (GMT 0)
Yeah. If your symptoms get worse as you taper it is because your maintenance meds aren't good enough to keep you in remission and you will get worse as you taper. You should be taking 6 Asacols per day. I noticed your signature was different on your posts in this thread. Are you still alternating between suppositories and enemas? Looks like you're not taking them anymore. If you get to remission you need to continue on maintenance meds, including rectals, at a large enough dose that you can remain in remission without having to do the pred thing again.
Posted 3/3/2015 4:38 PM (GMT 0)
Thanks garylousville. Yes, I updated my signature after my first post. I take the max dose of asacol. I guess I should go back to the rectals also.
Posted 3/3/2015 4:56 PM (GMT 0)
Unfortunately, UC is forever. It never goes away. You can beat it back with drugs but if you quit the drugs the disease comes right back and often what worked before won't work again so you can't just beat it back, quit drugs, wait for a flare, and then use the same thing again. The best thing to do is treat it forever and keep the disease beat back, avoiding future flares at all costs. If you had done that the first time around you may not have progressed to left sided from proctitus.
Posted 3/3/2015 5:02 PM (GMT 0)
Oh yeah, if you aren't currently using rectal meds they can be a huge help as you're tapering pred. You could consider alternating between mesalamine and steroid enemas.
Posted 3/3/2015 5:19 PM (GMT 0)
Okay thanks again everyone. I have never stopped taking asacol, but was told from my GI doc to monitor how many pills I take depending on my symptoms. I also was told to take the rectal's on a need-to-need basis (obviously now there is a need, but I was unclear if I should during pred). Thanks so much for the advice...I feel like fellow UC'ers have better advice than these doctors sometimes!
Posted 3/3/2015 5:54 PM (GMT 0)
I would take your rectal medications nightly while you're flaring up. When in remission, some are able to go without rectal medications, others use them as part of their maintenance medication regiment. It's highly variable person-to-person.

A lot of us have delt with uc a longtime, and are familiar with the treatments. You will find you must become your own best advocate for what you need to recover from a flare, maintain remission, etc. The forum is helpful to bring up questions and alternative ideas to your gastroenterologist. In the end, your treatment should be a collaboration with your gastroenterologist, not an authoritative dictatorship haha.

Good luck,
Posted 3/3/2015 5:59 PM (GMT 0)
Thanks iPoop! I have a question...I see you are on Remicade. Do you like it? How long have you been on it? Do all these maintenance drugs continue while on Remi? Thanks again!

Sometimes a j-pouch seems like the answer! I swear.
Posted 3/3/2015 6:04 PM (GMT 0)
I've been on remicade 1.5 years now, no side effects, and it is the only medication that has given me remission with uc (that is, 1 bm a day without uc symptoms). Yes, all of the medications listed in my signature are my uc maintenance medications. Uc is often best treated with multiple medications simultaneously. The 6mp is to ensure I do not buildup antibodies to remicade, meaning it would no longer work. Rowasa, a 5asa/meslamine still helps me; trying to get off of it but it is still necessary.
Posted 3/4/2015 5:39 AM (GMT 0)
Steroid enemas every day, or alternating with your other rectal meds.

Increase your curcumin to at least 2.5 grams per day, according to this study:

Curcumin in Combination With 5-aminosalycilate Induces Remission in Patients with Mild to Moderate Ulcerative Colitis in a Randomized Controlled Trial.

http://www.ncbi.nlm.nih.gov/pubmed/25724700

I take 3 grams of curcumin per day as my maintenance drug. When flaring, I take six grams. Last time I flared, I took six grams of curcumin per day (and steroid enemas) and was able to go from 60 mg. of Pred to zero in seven weeks.

Hope you improve soon.
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