please help me

Everyone is different when it comes to prednisone, but in my experience, 20 mg is the dose where it stops being effective for me.

If you've been flaring for months and are upset and suffering, how much worse could a high dosage prednisone taper make things? As you said, you've tried everything else.

Doesn't sound like you are doing anything to reach the very bottom of the tract where suppositories would be of the most help so I would add them in but not discontinue anything. Also, that round of prednisone probably wasn't sufficient to do the trick. While prednisone sucks and I can see why anyone would not want the higher dose, if you're going to go through that hell then it might as well be done right, otherwise it might wind up where you have to take it twice or go on the roller coaster of any time you get to the lower doses you start getting symptoms and then you have to raise back up. All of this keeps you on pred longer than if you had just started out at the higher dose in the first place.

"Is it worth a high dose prednisone taper?"

With your current symptoms, no, not in my opinion.

Sorry to hear you aren't doing well. I had a big slide back Sunday and yesterday myself, so I bit the bullet and took my pred today. Hope your doc has some helpful suggestions for you.
I really think weaning is what is causing you to flare up, my hormones were a mess when I weaned both my kids and I didn't have UC then. I wonder if some evening primrose oil would help balance htings out a bit for you. You could also call your OB and see if they have any suggestions. How often are you bf-ing these days? I found once I got down to 1-2 feedings things settled, but that took me a long time, especially with my youngest!

Ask your GI about hydrocortisone suppositories. They can provide the anti-inflammatory benefits of Prednisone, but not the side effects. They will treat the rectum and perhaps a bit of the sigmoid, and are highly effective for mild to moderate flaring in that area.

I am on 30 mg of pred orally and cortenema at night, so 40 mg total. What is crazy is the bleeding was almost gone on Friday, and then Sunday it came back and has stayed at the same level. I figure this is my body telling me it needed help. I hate pred, I have never taken it for more than two weeks for asthma before (starting at 40 mg a day). I hope my husband, kids and I survive this journey!

I would try the suppositories again, I know the leaking is a pain (and irritating) but they do help calm things down and do try the placenta tincture.

There are a lot of posts on this site about nopal. It's helped some and others not. I can only testify to the effectiveness of the homemade nopal water -- it worked great for me! Some people have used other forms of nopal too. Here's a link that has a lot of other links to threads about it.

/www.crohnsforum.com/showthread.php?t=71733

In these threads it will tell you exactly how to make it. You use the nopal cactus pads (about 4-5 oz) cleaned and cut up into 2 qts of water and then drink the water after it has soaked for at least overnight. Leave the cactus in the water as you drink it. It sounds weird, but nopales is a staple in Mexican cooking. I buy it at a Mexican grocery store. If you have any questions about it, one of these threads likely has the answers! Start with about 8 oz of the water /day and you can increase it if you want. I started with 2 8oz glasses in the AM and 1 in the PM. Now I am at about 1 glass in the AM & 1 in the PM and am doing well. No symptoms at all since May.

Good luck!

I am sure the infusion will get you going in the right direction. Seems like perhaps you need the infusions closer together? You can also try a higher dose? There is always the option of changing to another medicine, like humira or simponi if Remicade isn't effective for you but I don't think you're there yet. I would definitely do the suppositories and wear a pad if you need to. Just never pass gas with them in, that can cause terrible leaking. I've made that mistake many times.

Don't panic. I really think the flaring is due to hormonal fluctuation. As you go to fewer feeds per day, your hormones are probably more unstable/up and down than when you were feeding full-time. Your body revs up the hormones when the baby eats, then the hormones drop after a few hours, then they're revved up again for another feed. It's like a roller coaster right now.

Have you considered weaning faster? I breastfed for exactly 12 months and then Stopped pretty much cold turkey. My poor kid -he was cut off in one day! I pumped to help with engorgement but that was only for a few days.

Once you stop breastfeeding, your hormones can go back to normal.

In the meantime, I recommend a five day course of 40 mg of Prednisone. Hit the inflammation hard. No need to taper when it's that short.

I don't think anyone should bother with Pred at small doses like 20 mg.

Ultimately, I don't think you'll get to 100% until your hormones stop fluctuating. Btw-were you on the pill before you got pregnant? Maybe go back on it once you wean? That could get your hormones level quickly.

Another idea is to try melatonin (if it's ok for breastfeeding). That affects hormones.

You could try Gary's Alkegra idea. I take a lot of generic Allegra everyday for allergies. Maybe it helps my UC?

Totes, Have you tried "No more milk" tea? it is mint, hibiscus, parsley and sage, do I don't think it would be hard on UC, but it is a good way to help dry up your milk so you don't end up with mastitis. (I had it twice with my youngest and it is terrible)
hopefully once hormones settle you will feel better.

I'm feeling better (some of that is the pred high, though). I am still having 4-5 BM's in the morning which is brutal for me, but the bleeding that picked up over the weekend is back down to what it was last Thursday, so I see that as improvement. If the pace continues like this I will be feeling great in 5 days for sure! I may even go back to running at the end of the week. Fingers crossed!

Can they move up your next infusion?
My second infusion was both doubled in dose and administered about a week early