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I'm a yo yo on Pred, dip below 20mg issues

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Ulcerative Colitis
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Posted 3/6/2017 3:30 PM (GMT 0)
Dang it, I was at 5mg and my symptoms were so bad, that I bumped back up to 20mg. Also, I dropped down to 5mg and got a cold! I don't want my fistula to reopen and I can tell it was heading that way.

When I have inflammation, I have terrible gas that last about a minute to fart out and smells like rotten eggs. No egg eaten either! My blood and pain are bad too when inflammation is high.

I'm on rectal meds as well.

Going to start Stelara soon.

It's like my colon does not like food. I've tried everything else, viral medication and bacterial medication so it must be the food making it angry.

Just venting.

 

Posted 3/6/2017 4:48 PM (GMT 0)
Nothing worse than being almost off of pred and having to up your dose again. My last flare i did that twice... so i get it. It totally sucks. At least now there's no doubt you need stelara. Before you had questioned whether it was really necessary.
Posted 3/6/2017 5:18 PM (GMT 0)
YEa im going on Stelara. I wish there was other options. Plus I have taken numerous photos to show my doctor of seeing pills of asacol in my poop that a slightly cracked open with all medication inside.
Posted 3/6/2017 10:01 PM (GMT 0)
Im in the same Cycle, tried to come off pred 3 times now. First time i got down to 20-15 mg before the symptoms came back. 2nd attempt i came down to 10-5 mg and then again the symptoms returned . This time my GP has gave me complete control of the dosage and said to come down when i feel ready, currently been on 20mg and decreasing my dosage alot slower. I am also taking calcium tablets to help with my bones as ive been on pred for a while.

Post Edited (Dan Embrey) : 3/6/2017 3:16:45 PM (GMT-7)

Posted 3/6/2017 10:07 PM (GMT 0)
Do an alternating dosage of pred.
q
Posted 3/6/2017 11:45 PM (GMT 0)
WHATs a good alternating dose, please give an example. I would like to get off it and get my bloating down. Thanks
Posted 3/7/2017 12:55 AM (GMT 0)
What sized pred tabs do you have? I'd alternate up and down by 1/2 a tablet. With 5mg tablets you'd do 7.5mgs one day, 5mgs the next, back up to 7.5mgs. Generally, you do this only under 10mgs. It sometimes makes no difference at all doing this.

I find alternating doses best for waking up stubborn adrenal glands if you're experiencing withdrawal symptoms like full body ache and fatigue.
Posted 3/7/2017 1:15 AM (GMT 0)
What dosage are you at now? And what were you at before it?

q
Posted 3/7/2017 3:43 AM (GMT 0)
I am really hoping the stelara is the key for you. It would be great for you to get healthy. it's been so long that you've been yo-yoing up and down.
Posted 3/7/2017 11:45 AM (GMT 0)
I was at 5, now at 20 last two days, (as a side note, I have a cold and cold sore in lip ) I was doing get advoiding the cold going around, I even bragged about it....it caught up to me, LOL I've been in bed last two night at 630
Posted 3/7/2017 4:39 PM (GMT 0)
Oh no....totally sucks that a cold took such a hold...plus cold sores! Do you have any antiviral meds?

Why back up to 20 from 5mg and not the dosage you were at before the 5?

Hope you start to feel better soon,
q
Posted 3/7/2017 4:46 PM (GMT 0)
I have been going down by five, but I just was getting worse and worse , so I jumped up to where I know it works at. My local hospital infusion center is seeing if they can get Stelara and then I will start. Funny thing about when I take pred, I can feel it work by 2pm in the afternoon(I'm alert and feel good) after I take my morning dose at 7am. So it takes about 7hours for me to feel the effects of it.
It wears off by next morning ,I'm bleeding and painful poops again. Thanks for your replies they help.
Posted 3/7/2017 4:56 PM (GMT 0)
Unfortunately, your situation sounds like my husband's before he finally found remission on Xeljanz. He could not get below about 20 mg prednisone without flaring. See if you can go down by 2.5 mg every week or two. If you start with symptoms, then go back up to 20 mg which may be your magic "maintenance" number. It may be that the only way to control the symptoms is staying at that level until you get on the Stelara. Then you start tapering down. If the Stelara is working, you will be able to get off the steroids. It can be a long process.
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