Specialist Didn't think much of MY Plan... thoughts?

Your GI could be thinking that since you've been on three cycles of pred this year, chances are you will flare again when you taper off of pred again. So you have three choices...

You've been on pred three times. I don't think pred is an option anymore. The question is how to stop flaring without resorting to any of these three choices.

Have you tried alternative treatments? Keeping a food journal? Changing your diet? Fecal transplantation? Turmeric? Boswellia? Ginger? Spinach? Magnesium and calcium supplements?

I have tried all that naturopath stuff (BS in my mind, didn't do squat for me in 2002 during my 1st issues, led to my first prednisone). Problem is, I didn't need it until this may so who knows if it works since I have been on Prednisone almost the whole time.. I wanted to give all that and whatever else a try before going on Imuran, he thought not. I want off Pred and don't want to be on Imuran but if i ignore him and dose up on VSL#3 and fish oil, etc etc... and I super flare again, it's back on pred and Imuran (supposed to be on Pred when you start Imuran) BUT, will that make things worse if I try the non-Imuran gambit??

Aggressive is good, if you ask me. It does appear that you are steroid dependent which is bad. Now you need to decide to go with option 1, 2, or 3, each one ramps up the situation a bit. You have a lot to think about but I do encourage you to find a way to successfully get off prednisone so you can avoid irreversible damage.

Sue

UC is almost throughout. To be honest, I don't really know... Doc brushed of Salofalk when I suggested it, his mind was made up for Imuran or Remicade. I suppose I will start tomorrow and see what happens :)

Mind you with the exciting news from AFMNet I might not have to wait long for a "cure" (Prof. Yoshinori Mine's research at the U of Guelph) -- as reported in the last issue of badgut.org

Although, unlike you I have proctitis and not all through my colon I was on prednisone for 5.5 months last year and was able to wean off and in remission using rectal meds.  I would believe you could "try" your suggestion - I would do that before anything else - but I am a very conservative person.

Good luck and remember it is your body - you don't have to do anything you don't want to - no matter how many doctors "suggest" or agree!!

ElaineNY

Is it possible you are weaning off the prednisone too fast? 3 times to be on and off since May seems pretty quick to me. When I have been in a bad flare I really have to go slow to get off the prednisone. If I just have a small blip then I do the 40, 30, 25 and so on pretty quick. But when I have had a bad flare my doctor makes me go by 2.5 mg a week once I am down to 20 mg, otherwise I flare, but for some reason going slow I have better success.

How long do you stay on each doseage?  I was on 40 for a week, 30 for 2 weeks, 20 for about a month or so as I did not stop bleeding (temporarily up to 25 until stopped) then very slowly - 1/2 mg a week down until off.  Twice when bleeding returned I upped the doseage 5 mg. until it stopped and then back down - took 5 months!

ElaineNY

What happened when you dropped too low. How low was it and what happened when you got that low?

I've been on prednisone since Sept. 09. I failed a taper twice below 10 mg. and the third round beginning last March put me on a very, very long taper. I'm taking it every other day and dropping by one milligram a month because I've been on it so long. I'm at 3 mg. every other day now.

Neither me nor my doctor consider myself prednisone dependent at this point. It's not managing my UC, according to him.

I'll tell you this. Though I had a relapse a month after tapering off of pred for the second time. (March 2010), I would have never gotten as far as I did without Canasa suppositories. Canasa saved my butt.

At the time of the second flare, the doctor was robotically writing the script for 6MP and I said forget it. I wanted to try Asacol again with enemas nightly and suppositories daily. I made it. But if I relapse again, I will definitely have to go on 6MP.

If you really think you can do it, you should consider loading up on enemas and suppositories

Option 4: Get a second opinion. If your doctor refuses to even discuss a treatment plan you're interested in and feel might be a viable option, and worse, counters by asking if you want to take the most drastic course of all - "Do you want to have your colon removed?" - perhaps it's time to see someone else. I'm a firm believer in the patient being an active participant in the care of and decisions about his/her own body. You must be your own health advocate. Doctors don't always know best and certainly don't always present you with the best treatment options for YOU.

I agree you may have been told to taper too quickly - who jumps from 50 to 25? - and that could be why you've been on it so many times this year and have been unable to successfully taper. It's a bad sign that your pharmacist had to tell you the correct way to taper. Either your doc didn't give you any instructions or had you taper way too fast.

If you're interested in giving alternative methods a fair shot, you should find a doctor who's trained in complementary medicine - both traditional and alternative approaches. In general, you have to make a concerted effort to find such a GI. In my experience, most GIs can't/won't discuss probiotics, natural healing supplements or dietary changes. If you can't find a doctor in your area, you may have to educate yourself, like I did. There are plenty of excellent resources out there and I'm proof that alternative methods can work and work very well.

For me, I'm toughing it out with anti-inflammatories. I left my own doctor over this very issue. I felt he was doing the expedient thing in prescribing 6mp. It's not been an easy road for me. It's kind of like a balancing act between minor symptoms that could erupt into major ones and chasing them with enemas, canasa and asacol. Like Quincy said when I was complaining a lot. Just take 6MP and be done with it. I haven't yet.