New to UC - wrong dosage prescribed & need prednisone advise

I was recently diagnosed with UC, as of almost 3 weeks ago. My symptoms have only semi-decreased over the past few weeks. I am still currently very sick in the mornings but OK throughout the day which is a huge improvement from where I was at just a month ago. I was initially prescribed 1mg. of prednisone but after my follow up gastro. apt. this morning she has deemed that incorrect and prescribed me with 10mg. to be taken three times per day.

The problem is, even on 1mg. (3mg. total per day) I have trouble sleeping. I have not had a full nights sleep in days and am up approx. 6 times per night just to pee. I am worried about taking a higher dosage. Does anyone have advice as to what time I should take the prednisone so I can avoid being up all night? I was taking a dose in the morning, one with dinner - around 5:30pm, and one right before bed. My dr. didn't seem to have much advice.

My gastro also prescribed me with Dicyclomine 10mg. to be taken 4 times per day. I am picking up that script after work this evening. I am also on Lialda, which I will take for one year. I'm not sure of the dosage amount though.

Also, my dr. clearly stated there is no natural approach to managing this disease. If anyone has any advice on this subject I would love to read it. I don't like the idea of being on steroids for any period of time, but I also cannot stand my quality of life at this point.

Any advice is greatly appreciated.

Post Edited (marciac12) : 12/6/2016 1:20:22 PM (GMT-7)

Were you diagnosed with UC or colitis? Dicyclomine is treatment for IBS. Sounds like the treatment is to manage inflamed tissue with Pred and treat IBS with Dicyclomine. IF you have IBD, you should start with Mesalamine.

30mg pred/day is a fairly low dose to start a taper. Some people require 40 or even 60. (Often taking it all in the morning can help sleep.) Usually after a week at the top-dose, the plan is to taper down by 5mg every few days. What is your taper plan?

You can ask about sleep med like Ambien to help get good rest.

Natural remedies covers quite a bit. Some of it not natural, but is seen as such because it is non-pharmaceutical. Other things are anti-inflammatory foods, which can help manage symptoms or supplement anti-inflammatory meds - but are mostly insufficient to address a flare alone. They may be able to work as a maintenance drug when in remission.

Resistant starches and grains that have butyrate fermentation may also manage symptoms and possibly promote mucosal healing - but it is not clear they suppress the defective autoimmune response present in IBD.


In my opinion, doctors and patients do not have good conversations about this because docs speak about inflammation and patients speak about symptoms. Not the same thing. Also many supplements should be used with meds, and patients are looking for substitutes for meds.


Foods that you seem to be sensitive to (likely because you gut microbes are in dysbiosis) are good to discover and avoid. Many pre-biotic and probiotic foods and supplements can help improve the composition of your gut microbes. This is also symptom management, but seem to help many.

But is is key to nail down if you have IBS or IBD - were you diagnosed by a pathologist who looked at biopsies taken during a scope?

DBwithUC - I was diagnosed with Ulcerative Colitis after a colonoscopy. They did biopsy 10 abnormalities in my intestine but found them to be normal.

From my understanding my dr. prescribed me with Dicyclomine because I was complaining about abdominal cramping - but I did tell her I started my period this morning and the cramping could have been due to that. In fact, I was almost positive it was. I informed her of that but she shrugged it off saying it was probably the colitis.

I wasn't sure if I was allowed to take all three tablets of Prednisone in the morning, she did not specify. I'm going to try it to see if it helps me with the sleeping issues. My body doesn't respond well to sleeping aids, she did suggest a script for one but I denied it.

When my son was of prednisone, he had trouble sleeping. His pediatrician recommend melatonin. It really worked for him. Also, talk to your doctor about taking all the prednisone in the morning instead of throughout the day. I also agree that you may need a bigger dose. My son was only 72 lbs and he started by taking 35mgs per day.

1mg would literally do nothing I'd imagine. I'd agree with iPoop, what other medications are you on and what have you tried? 6x a night is pretty severe, and if that's an improvement, I wonder how it was before? Dicyclomine never did anything for my symptoms and I could never sleep on prednisone without a sleep aid. Nothing OTC helped either. I had to go right for the ambien - which eventually became much less effective. The best thing would be to find a long-term treatment that enables you to get off steroids quickly. Then you won't need the Dicyclomine or the sleep aid... Natural treatments, such as diet? Or supplements? Probiotics? All of these work for some - usually in conjunction with rx meds.

Hi Marciac12, sorry to hear about your diagnosis. However, this forum is full of knowledgeable and kind people and I hope you find it to be helpful. It has helped me immensely since I was diagnosed early this year.

There are many existing discussions on this forum regarding natural/non-pharmaceutical treatments. For a list of commonly known treatments and routines that help manage the disease (including pharmaceutical, natural, and in between), this top forum provides quite a bit of high-level info:

https://www.healingwell.com/community/default.aspx?f=38&m=1666318

Once you identify some items of interest, you can search in the search box on the Healing Well website (or on Google or something). I'm sure you'll find stories on the experiences of others.

As for managing the disease naturally, implementing some natural/non-pharma supplements in addition to taking my prescriptions has pushed me in the direction of remission. We all respond to treatments and supplements and diets uniquely - you'll just have to try and see what works for you.

Best of luck!

What's your total bms per day? If you're getting that much at night then it must be pretty high. IV steroids or biologics might becone necessary if you're fulimant( over 10 bms a day).

Some have luck with naturals and others do not. Lots of things won't work but perhaps a few will a lot of patience. I never had any luck with them.

teehee. I wish I could tell you do sniff some lavender and that everything would be peachy. The only thing that's ever gotten me to 100% without medication is surgery. I've been med-free for well over a year now. Surgery is a drastic solution, but it's really the only way to be med free - and even with surgery, some people end up with less than stellar results and need medication at some point in their lives. I hope i never do..

if you're visiting the crapper that many times at nite, it's hard to say what effect the pred is having -

get on the max lialda (4/day) add some rectal meds and take the pred all before say 3pm - you need to get things under control, the sooner the better -

oh, and your doc sounds like a dope !

If you're three weeks in and haven't seen much, if any improvement then I'd call and tell your gasteroenterologist that. It's important to keep him/her aware of your progress or lack thereof.

I would ask:

1.) Is 30mgs of prednisone enough as i haven't seen much improvement yet? I know that 40mgs or more is sometimes necessary. Sometimes even IV steroids are necessary. There's some who don't respond to steroids and remicade or cyclosporine might be considered.
2.) Is 2 lialda a day enough as i haven't seen much improvement yet? How about 4 lialda a day?
3.) I want to try rowasa enemas, can you write me a prescription?
4.) Should another stool test for pathogenic causes to my symptoms be done? As not responding to prednisone may be a sign that it's an infection like c diff.

I would try higher doses for a few more weeks (items 1, 2, 3) and if you're not getting a response then ask about much stronger medications like biologics (remicade, entyvio, humira). Pancolitis and your symptoms are often enough justification to go to stronger meds. Always try lesser meds first, but a non response means it's time to treat your uc much more aggressively.

Remicade is administered through an IV infusion usually on a 6 or 8 week schedule (after the loading doses). It takes about 2 to 3 hours. Humira is given by shots usually every 2 weeks. There are some dangers of course to these meds but for most people the side effects are pretty minimal, especially compared to steroids.

Of course no drug works for everybody but from the research I've done, they do have a pretty good success rate. The nice thing about Remicade (can't speak to Humira on this part) is that it usually starts working almost immediately.

Post Edited (NiceGuyEddie) : 12/7/2016 9:59:59 AM (GMT-7)