How fast does pred work for you?

For me, any where from 5 days to 2-3 weeks. Correlates with the severity of my flare.

40mg pred would usually start working on the same day for me - it was very, very quick. It always sorted out the pain and the fevers first of all; the BMs took longer to sort out. In fact looking back on it, a few times I became constipated in the first week on pred, but I never returned to having a solid, 1-a-day, BM. Maybe it was 'cos I tapered too fast, not sure.

For my husband, it has taken longer each time he has gone back on. It took weeks last time. Only way it kicks in for him is 20 mg in the morning and 20 mg in the evening, which means no sleep. He has not been able to go below 20, however, without flaring starting up again. Is currently trying Xeljanz or will have surgery since nothing else has worked and cannot be on steroids any more

justgettinby said...
How many mg's are you taking and for how long so far?

I just started 40 mg on Thursday to get a pretty bad flare under control. So far, I am eating a little more without being "punished" for it. I'm able to drink water, juice, and tea without running for the bathroom. I have much less pain, and it seems like less bleeding. However, I'm still waking up at night to use the bathroom, and mornings are still rough. I still get bloating and nausea. I'm supposed to start to taper this Thursday so I'm praying to be much better by then.

I've done Pred once before, also at 40 mg, but that was 4 years ago for a much more mild flare so I remember it felt amazing, but I don't remember much to compare to now.

Good luck to you :)

I am on 30mg and have been on it for 4 days. I'm still seeing lots of blood and mucus. My doctor said that if this doesn't work in a week, he is pulling me off of it and trying something else. I HATE this evil drug and he knows it.

Worriedgirl3 said...

I am on 30mg and have been on it for 4 days. I'm still seeing lots of blood and mucus. My doctor said that if this doesn't work in a week, he is pulling me off of it and trying something else. I HATE this evil drug and he knows it.

I hate it too!! I mean I love what it is doing for my body right now--I can actually eat again. But I remember what it did to my mind last time...and I'm terrified that will happen again. I already had insomnia last night, even though I'm exhausted during the day.

Did you start at 30 mg or taper down to that? I feel like you might need more if that is what you started at. I've only started at 40 mg...I remember when I was bouncing around to different doctors 4 years ago I did have one tell me 40 mg was too much for me...but again that was a much more mild flare.

My current GI says that 40 mg is the right dose (pancolitis, moderate-severe flare) and that starting at less would be ineffective. And if you've used it a lot in the past it does seem that it becomes less effective.

I responded very slowly to 40mgs of prednisone, took about 3 weeks to slow bms and bleeding. I never reached anything near a remission-like-state while on prednisone (like I hear some do achieve). Pred took a flare of 20+ bms a day down to about 6 bms, an improvement. Still mushy bms, very very urgent with accidents at that stage.

Oh wow. I hope it kicks in too!! But I wonder if there is another steroid option cause if you can't do 40 mg, and it already hasn't worked well in the past...its definitely not sounding good.

Are you looking into increasing lialda, canasa, or uceris, or beginning a new medication that you would be able to do more long term than pred?

It took nearly two weeks for it to kick in for me, but when it did it was as if someone flipped a switch in my body overnight and turned off the horrible symptoms. I also started on 30 mg plus cortenemas nightly.

@Worriedgirl3 - I feel like a biologic is probably the best option. That's what I'm looking at now as well. But I didn't realize you were pregnant--my heart goes out to you! Flaring is bad enough, but plus pregancy!

I've heard that you can't do biologics while pregnant but I'm not sure if that's still accurate info. It may depend on the severity of your flare too. And out of the biologics, Entyvio might be the best bet because it's more localized to your gut. Either way, I hope you get on something that works for you.

@gizmo - OMG the teeth thing! 4 years ago, on prednisone, I felt like my teeth were becoming "loose" and they would also feel so sensitive. I couldn't find any info on it so I thought that was just mental side effects from the pred...like I couldn't tell if it was real or if I was imagining it. I finally got to the dentist this year (it's been a while, lol) and he said if you do pred you should get your teeth checked more regularly too--it weakens your teeth just like your bones.

I had mood swings/depression that lasted for a while after the drug too. The insomnia and night sweats were pretty bad too, so was the weight gain. Right now I'm on day 7 of 40 mg and my worst issue right now is water retention and dizziness. My appetite is back though :)

Since you're pregnant I'm assuming many drugs are off limits. Is there anything you can take to help you sleep that is safe for the fetus? I took ambien while on pred, but I'm not sure if that's a no-no while pregnant. I'd hate to see you sacrifice getting into remission while pregnant.

TotesMagotes said...
When I was on 30 mg and pregnant I had to take ambien or lunesta. I was told ambien is safer. I think its category B. I only took it the nights I absolutely needed it. I know your pain. I am so sorry!!!!!

Thanks! I might need to look into that. I am absolutely miserable and I'm also just very down because I feel as if my pregnancy has now been officially hijacked by this disease. No joy left!!!

If the pred was even working, maybe I would feel more positive. It's not though which makes me want to just quit it or taper off faster than recommended.