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Prednisone taper

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Posted 7/8/2012 1:48 AM (GMT 0)
I was blood free at 7.5mg and started having small amts of blood at 5mg.  I suggest to GI maybe I should have gone by 1s instead. He thought we were going slow enough doing 2.5mg every 2 weeks.   I want off this stuff so bad but did I drop to fast.  Now that I"m off the 6mp for a few weeks I'm so afraid I will again be at square 1. 

So frustrated.  I was finally seeing the light at the end of the tunnel.  Finally no blood... Caved to 6mp which I hated but I was finally on a maintence med and was on it for 8 weeks, almost off the Prednisone and now it' s like I'm starting all over

Posted 7/8/2012 12:22 PM (GMT 0)
Hi seasons21,

Ive just recently went on prednisone, started at 50mg and tapering 5mg every week. Currently im at 45mg and starting 40mg on tuesday and i was doing great, but i noticed yesterday and today that there has been tiny amounts of blood only in my morning bm and also today my stomach has that uneasy soon to turn to cramps feeling (if that makes sense) .

My GI also wanted me to take 4000mg of pentasa daily but it really upsets my stomach.

Im scared that im going to have to go up in my dosage of pred and start my taper alllll over again...

This whole thing is annoying, sorry i didnt really answer any questions you had, just wanted to say im frustrated too haha
Posted 7/8/2012 12:43 PM (GMT 0)
That's ok.  Good to know I'm not the only one frustrated :)  I hope you feel better soon.

Anyone else use Pentasa to help wean of Prednisone?  Any other tricks to help you wean off?

I used a cort suppository last night in an attempt to clear up this small amt of blood.  This morning looked better, but it is alway varaible so I'm not holding my breath.

Posted 7/8/2012 4:29 PM (GMT 0)
When I was tapering, I always noticed a tiny relapse for a day or two when I would drop down. I used the hydrocort enemas for those days, then changed to generic rowasa for the rest of the week. I also ate virtually no sugar on my drop down days. Good luck, you're so close!
Posted 7/8/2012 5:04 PM (GMT 0)
Keep doing the enemas thats my suggestion.
Posted 7/10/2012 8:51 PM (GMT 0)
Hi Seasons,

Sorry you are going through this. Prednisone has quite the yo-yo effect doesn't it? How are you feeling now? I finally got off the Prednisone two weeks ago and was having terrible body aches and felt lethargic. Then out of the blue the Blood and D came back. Rather than going back on Prednisone I am going back on cortifoam twice a day plus a nightly enema. It seems to be working. I finished 3 remicade infusions and it has gone really well! I go in for the infusion and I can feel the difference right away with no side effects at all. Hope the 6mp kicks in for you soon. How long has it been now?
Keep strong!
Posted 7/10/2012 9:12 PM (GMT 0)
I just came back from my specialists appointment and he told me to start using mesalamine suppositories once I hit 20mg pred. He said prednisone will help but the mesalamine added in will maintain the effects of the prior medication. I did 50mg pred today but starting tomorrow I will be at 40mg, dropping 5mg every 4 days.

I think you should try adding suppositories or an enema if you think you can retain them.
Posted 7/11/2012 12:23 AM (GMT 0)
2.5 every two weeks is definitely a very slow taper already. I haven't even heard of tapering by 1mg. I've always tapered by 5/week. The fact that your symptoms return as you come off of it just means you are (as my doctor calls it) "Prednisone dependent," meaning that when you come off the pred, your symptoms return (like me). It's not how fast/slow you are coming off (since you're already at a very slow taper) - you just need to find another maintenance drug combo that works better for you. I would recommend a few ideas, but I have no idea what you've tried already. A lot of people have success with diets and alternative treatments (like SCD, etc).

If those don't work or are too difficult, you might have to reconcile yourself to being on biologics or immunosuppressants long-term. I know the idea is not appealing, but it's definitely way better then going on and off Prednisone repeatedly - that wreaks total havoc on your body. I put off immunosuppressants as long as I could, but after three rounds of Prednisone in a year (being on it more often than off it), I finally caved. I could not tolerate the Imuran when I tried it, but so far Remicade has been working wonders for me and is WAAAAY better than Pred. Just sayin'.
Posted 7/11/2012 5:08 PM (GMT 0)
I tapered by 1mg from 10 to 1mg after starting at 40mg 6 months ago. YES! They do have 1mg of Prednisone so you don't have to split pills. Just ask the pharmacist.

Even though I had a VERY slow taper my symptoms kept returning so I decided to start Remicade. After 2 infusions I was able to taper off the prednisone by 2mg every 5 days and now I am completely done! Yippee! Finally no mood swings, acne and my moonface is getting better each day. Never going back to Pred again :)))
Posted 7/11/2012 5:58 PM (GMT 0)
I had some negative effects from tapering the prednisone. Expelling lots of gas for one, which kept me from retaining my mesalamine enemas as well as frequent urination, rash and fatigue.

Now, just a few days after completing the prednisone, finally the gas has mostly gone away so I can now retain my enema for at least half the night. I am still peeing a lot and have to get up at least once a night. Of course, the moment my butt hits the seat, my bowels react in a Pavlov response and have to pass gas or eliminate, so there goes my enema! Ugh ... hopefully, that side effect will pass soon too. Coconut oil banished the rash.
Posted 7/11/2012 9:31 PM (GMT 0)
Once you are down to 5 mg, you are taking a physiologic dose of cortisol basically- no need to rush. By all means try 1 mg (a compounding pharmacy can make these for you, if you cant get an accurate enough pill splitter). Your body, not your doc, tells you how long it takes to get off it altogether- but no need to lose any sleep over physiologic doses.
Posted 12/9/2012 1:44 AM (GMT 0)

Just curious how the taper went.  I am currently tapering off of 40 mgs, going down by 5 a week, and am currently at 20.  I saw a slight amount of blood this week which really scared me, so I have been very strict on my diet.  I am trying the SCD diet now and it seems to be going well.  Just getting bored of chicken. 

Has anyone succesfully come off Predisone and went back to 5ASA meds?

Thanks! 

Posted 12/9/2012 4:43 AM (GMT 0)
The 2.5 every two weeks is slowest ive heard. You gotta remember to try stay on your dose for 2-3 days before going back up. Im going down by 5 and first few days if a lower dose are tougher.
Posted 12/9/2012 11:31 AM (GMT 0)
Dontscopeme, it makes sense what your doc said, but you might want to add the enemas in immediately. Why did he suggest just suppositories?

Seasons21, I know how discouraging, devastating actually, a failed pred taper can be. I like Kdragon9's advice.

If you think 2.5 every two weeks is slow, I was dropping by 1 mg a month below 10.
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