After Prednisone Tapering....

Hello all,

My 8 1/2 year old son was diagnosed with UC while spending 13 days in the hospital in late March of this year (for diarreah, bleeding, weight loss, anemia).

He had done very well on the Prednisone (full remission) and just finished tapering off of it last Sunday.

Unfortunately, the last couple of days his stool has started getting loose and today he had diarreah (no blood, though he did have a small amount of blood the other day but we think it was from a large stool that was painfull to eliminate and caused a bit of "damage").

We were hoping to avoid a maintenance med due to possible side effects and not wanting him to have to take it "forever", and have been concentrating on diet, vitamin supplements, and we are about to start a probiotic.  We have heard that some UC patients can stay in remission without a maintenance med.

Needless to say, we are disappointed and saddened that the symptoms appear to be returning after the prednisone tapering ended last weekend.

Any thoughts/suggestions are welcome.

Thank you.

Maka123

Maka, I am very sorry to hear about yoru son. It's heartbreaking when this illness strikes anyone but children with this illness, it's just so unfair. I understand your desire to avoid taking medication daily but at the same time, 5ASAs are very mild and probably won't cause any longterm issues - speak to your GI about this! In my opinion, it's way better to be on mesalamine, even longterm, over taking courses of prednisone regularly (even yearly or every couple of years). I think another thing you could try, which wouldn't be easy for a child, is rectal medication. Some people can use an enema or suppository every few days and it wipes out their UC symptoms. These types of medications are mostly topical and usually don't cause any side effects. You could also try high doses of probiotics and dietary restrictions but for myself, I noticed that diet was not the key to keeping my particular case of UC at bay. UC has big learning curve and it's very difficult to manage in the beginning and for some, it's always difficult to manage but you're going to have to be open to trying things to learn what works and what doesn't. I think realistically, if you don't want to use medication, surgery is the only option that can offer a long-term remission without medication. There are people here who have done incredibly well with diet and fecal transplant as well but medically speaking, with UC, surgery is the only "cure". :(

Hey Maka, I'm so sorry to hear about your son's challenge.

Fish oil is supposed to be helpful at calming inflammation. A lot of people tolerate it well, but I personally do not. It gives me the runs and increases BM frequency quite a bit.

Gutamine free? Do you mean gluten free? Some people really have success with that. I have not done it myself. I've tried SCD twice, but dropped weight fast. The nut flour was not tolerated by me, and I just couldn't get the calories I needed by a long shot with the diet.

As far as the regular meds that would help a person taper off prednisone, you shouldn't need Imuran yet... unless your son is struggling. Imuran and Purinethol (6 mp) are the same type of medicine, only Imuran gets metabolised to become Purinethol. These drugs are immuno-modulators, and are a more serious drug than the mesalamine type drugs.

If you don't want to talk surgery, I urge you to develop a good relationship with your son's GI doctor, and to learn as much as you can about the disease. Keeping it under control is MUCH easier than healing a flare-up. You shouldn't be worried at all about surgery at present, but just keep in mind that this disease can lead to that outcome. I've had the disease for almost a decade and am at a point where it is one of the next options, unfortunately.

With all that being said, keep an open mind to alternatives... as it seems you are. My case has been somewhat resistant to both alopathic and alternative treatments, but there are things that help. There are many books out there on the subject. One book that I've found most helpful is called "Listen To Your Gut" by Jini Patel Thompson. She has Chron's disease, and has extensively researched alternative treatments for IBD. Always keep a working relationship with your son's physician, but know there are other things out there that may help, but haven't been through proven medical studies so the doctor cannot recommend them. Just run them by the doctor first, as they will be able to give the go ahead of it being safe enough to at least try.

The most helpful supplements for myself are: Aloe Vera Juice to sooth and heal the colon (George's Always Active Aloe Vera Juice because it has the ingredients taken out that would cause diarrhea), L-Glutamine Powder (helps heal mucousal lining), Turmeric Root Powder (Key ingredient is curcumin that decreases inflammation).

Another thing to remember: stay away from Non-steroidal anti-inflammatory pain killers like ibuprofen. They can trigger a flare-up.

Good luck. I hope what I've been through is of some use to you.

Hi I am new to this forum too and have recently tapered off prednisone only to have my symptoms back again. I am due to be put on Azathiprine which is a none steroidal immunosuppressant. Last flare up I stayed on prednisone for nearly 2 Years I was addicted and coming off them was the most painful thing with UC related arthritis and moods. I recommend keeping off steroids or like you have done short treatments. I wish you luck but once in remission things will seem a lot better.