Prednisone heartbreak! Looking for advice

So my flare started March 2012. Started prednisone beginning of April 2012. Been through lots of ups and downs and through different meds; started Remicade and tapering prednisone a few months ago. Things finally seemed to be moving in a positive direction. No blood, no mucus, frequency went down to 4/5x a day vs. upwards of 30 at my worst. Urgency was still an issue and I've been taking amatriptyline nightly to help. Taper of prednisone has been going smoothly. Met with dr 6/20. That day I dropped prednisone from 2.5mg/day to 2.5 every other day. Had bloodwork done to potentially start Imuran in the coming weeks alongside remicade. After 15 months I am so excited to almost be done with pred. Then I started bleeding And mucus Friday. Not a ton, but some, and also frequency around 8x/day. Called today to check in and told nurse about setback. She called baçk and said go back up to 10mg pred.

I'm heartbroken. I've got to get off this eventually. It hasn't done anything in my mind for months and the taper has gone so well! I'm 16 days from my next Remicade, and I would rather do anything (drug wise) than take more prednisone. I feel like my body is just addicted and I've got to bite the bullet and get off at some point. I can even tough it out a couple months until imuran kicks in with remicade! Any ways, I called back and told the nurse please anything but this, and if she talks to dr again and he insists on pred ill do it but I so don't want to. Any opinions? Should I tough it out an take more and hope I get off one day? I've pretty much settled in to a flare lifestyle and feel like I can wait it out at this point. What would everyone else do?

bite !

I'm absolutely leaning towards bite. I also take 5 Asacol HD/day. Have tried and ruled out for various reasons budesonide, humira, purinethol. We discussed enemas early on but ruled them out because I was up constantly to breastfeed (just recently stopped), isually nursing on the toilet unfortunately. Are there non-steroid options? I'm not opposed to them at all but the doctor hasn't mentioned them as anything he thinks may help recently. I think I'm nervous after finding a doctor I like a little bit that he's going to insist on 10mg pred and I'm going to have to say **** your years of med school! I won't do it! :)

I also say enemas or if you are really against them...maybe Uceris. It is a steroid but supp. has way less systemic effects than pred. Good luck and keep us posted!
B

Bite the bullet and get off the pred :) used it in my first post

I don't think my insurance approves uceris. I will ask about the cortisone enemas when they call tomorrow--I'm not against anything that will help..except more prednisone. I'm thinking 15 months is 15 months past my limit!

Uceris is budesonide. If the insurance won't cover Uceris, you can take generic budesonide.

I have taken budesonide before. That's when I discovered that insurance wouldn't cover uceris. I don't remember the exact circumstances but I was on prednisone (during a taper) and budesonide 9mg/day. I thought my doctor at the time said it didn't have the side effects of prednisone (although he's since proven himself slightly moronic). My new gi said I should not be on them at the same time. Should I potentially switch over now that I'm at such a low dose? My aversion feels like it's to steroids in general. Should I not be concerned about taking something like budesonide long term?

2.5mg a day is a fast taper. Have you tried going really slowly, like 1mg a week? I did that down from 10mg, i may have gone even slower but I don't exactly remember. I know how badly you must want to get off pred after 15 months. I think there's a balance between frustration/desire to get off pred and knowing if you taper off too quickly, you could ruin your chance at remission. I did end up hitting the point where i would have tapered off regardless of symptoms but it took gaining 20 pounds to get there... I think you should try tapering really slowly while you get on imuran. Hopefully imuran will help you to get back in good health.

How about a one-time double dose of Remicade or moving your Remicade dose up a few weeks?

I think most of us have been there with Predisone and the final 10 or 15 mg taper. You can either up your dosage, wait a week and see if your symptoms improve without upping your dosage or add another medicine to your arsenal to help with the taper. Hydrocortisone enemas are very effective and help with the urgency.

"I am trying to remember not to do too much at once so I know what's helping but of course patience is hard :)"


so very true !

Good news all around :) Don't have to bump up prednisone but he wants me to keep doing 2.5mg every other day for another week. Starting hydrocortisone enemas tonight, starting imuran tonight as well (it's a toss up if I can stay on this; purinethol made me severely nauseous and the pharmacist says imuran may or may not have the same effect), AND they're moving my remicade to tomorrow (so to 6 weeks from 8). I'm definitely 15 months past ready to not be on pred and I'm a little hopeful that this flare may finally come close to stopping.

Ks-the only reason I'm not totally on board with this being steroid withdrawal is because I'm having none of my regular symptoms. Usually I have headaches, joint pain, mood swings, etc when I even start decreasing. I don't know, I think I'm just tired of this (aren't we all). My remicade will be Friday and I'm starting the enemas tonight. I think if I see good improvement I'll be getting off the pred and hoping everything else can keep me afloat. Obviously if this time next week I'm still having blood and mucus I may have to get over it and go back to 10mg

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