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Droped to 20 on pred and symptoms returing?

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Ulcerative Colitis
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Posted 7/8/2013 2:18 PM (GMT 0)
Predisone in the short term is a fine drug. It's gotten me through some rough patches. If you can get on Remicade, do so. It worked perfectly for me for 2 years. I'm in a flare right now and IV pred is great. about to start the pills today and taper down by 5 every week and get on the humira.
Posted 7/8/2013 2:29 PM (GMT 0)
Taper is going easier and my symptoms are not getting worse with this drop. Pretty much staying the same(so far). Loose and skinny stools show me I still have swelling but no blood or mucus or real urgency. Frequency is not bad either. I been awake since 4 am and have not been to the bathroom yet. Got some gas but then again I been loading up on the Baked beans. I really am hoping my next Remicade on the 29th will fix whats left to fix. Will have to wait and see.
Posted 7/8/2013 2:45 PM (GMT 0)

scum1 said...
Taper is going easier and my symptoms are not getting worse with this drop.

good to hear
Posted 7/20/2013 3:41 AM (GMT 0)
Dropping to 15 tomorrow. The trip to NOLA went ok with all the drinking and eating. Feeling confident.
Posted 7/20/2013 3:46 AM (GMT 0)
That's wonderful. I love to hear about people feeling well :)
Posted 7/20/2013 12:44 PM (GMT 0)
good for you scum, hope all goes well.. I'm off prednisone as of last Monday. doing well. getting next Remicade on Friday the 26th.
Posted 7/20/2013 12:49 PM (GMT 0)

scum1 said...
Taper is going easier and my symptoms are not getting worse with this drop. Pretty much staying the same(so far). Loose and skinny stools show me I still have swelling but no blood or mucus or real urgency. Frequency is not bad either. I been awake since 4 am and have not been to the bathroom yet. Got some gas but then again I been loading up on the Baked beans. I really am hoping my next Remicade on the 29th will fix whats left to fix. Will have to wait and see.

Yes I missed a day of Navy beans and ate downtown at restaurants, did fine but back on the vitamin A chili with Navy Beans and dropped to 5mg prednisone.

Just cannot seem to stop eating some junk food like cherry coke and apple fritters but it seems to not matter. The low pred does cause fatigue so taking Yohimbine-HCI to counteract that and sleeping deeply. Nice thing is the first half of this pred cycle I would awaken middle of night with urgency.

No urgency at 5mg. No blood, solid stools thanks to :

Navy beans
Vitamin A
Raw Adrenals
Posted 7/20/2013 3:50 PM (GMT 0)
I missed my beans also. I packed 2 little cans for the trip but that was not enough for the 4 days. Going out to stock up on more today though.
Posted 7/25/2013 1:49 PM (GMT 0)
Been on 15 mg for several days now. Some issues with loose bms and some cramping but nothing drastic. I got remicade(4th dose) coming on Monday though so I am gonna stick to the 15mg for now and hope the Remicade straightens things out.
Posted 7/25/2013 1:56 PM (GMT 0)
Certainly hold at 15mgs for a few till the loose bms and cramps clear up. I'm currently at 17.5mgs of pred and tapering down by 2.5mgs now. My body was much happier with 2.5mg drops than 5mg drops -- less withdrawal symptoms.
Posted 7/29/2013 12:55 AM (GMT 0)
Last 2 days have see a turn for the worse. got the D and some cramping but no blood or mucus. Nervous about my 4th Remicade in the morning. Have high hopes for it but still scared it won't work
Posted 7/29/2013 1:37 AM (GMT 0)
Sorry to hear that.

I had a bad day last week / rinse mode.

Dealt with it and doing great - now forgetting to take my 5mg each day, get to it around noon.

No rush probably stop at 2.5 for a while.
Posted 7/29/2013 3:06 AM (GMT 0)
hope things go well for you scum, Hope this is your tipping point.
Posted 7/29/2013 9:41 AM (GMT 0)
Hi

Just thought id share my experience that have worked well with pred, the trick i use which isnt really conventional and may not work for everyone but i start on 30 mg a day which usually gets my symptoms under control within the first few days, i do this for a week then i go down to 25mg if at that stage im feeling fine i have the 25mg every other day for 7 days instead of everyday which personally helps me taper off the steroids better.

Dont know if anyone else has had luck doing it this way?

 

Posted 7/29/2013 1:17 PM (GMT 0)

notsosicklygirl said...
Th at's wonderful. I love to hear about people feeling well :)

 

 

Me too!!!!!!!!!!!!  yeah

Posted 7/29/2013 10:10 PM (GMT 0)
So Remicade infusion went well today. Gonna give it a few days to kick in and see if my symptoms improve. I figure if I call my GI he will bump the pred back up and I don't want to do that. I still have a box of Mesalamine enemas though so I might give them another try. Usually the enemas just make the next day worse but I might be forced to give them another shot
Posted 7/30/2013 1:23 AM (GMT 0)
It's worth the shot (enemas that is).

Don't forget that your tapering process can be done with alternating dosages.

Or...you should lower the amount dropped each time.

Hope the Remi kicks in nicely.

q
Posted 7/30/2013 12:27 PM (GMT 0)
Scum1, I'm tapering pred as well and my body is much happier with 2.5mg drops, once per week. Much, much easier on my system than dropping 5mgs once every other week. Best to do as low of a percentage drop in medication at-a-time as you can. Thought I'd offer the suggestion. Best of luck!
Posted 8/1/2013 1:51 PM (GMT 0)
Well blood is getting worse :( I guess I am going to bump the pred back up to 30 and try to taper again. Need to call my GI. Not sure if I should go ahead with the pred increase(go back to 20 or 30) or visit the GI first? Been on pred since May. Any thoughts
Posted 8/1/2013 1:59 PM (GMT 0)
Always consult your GI of course. Mine had said you go to the last known safe dosage that you were doing well at. If you were doing fine at 20mgs, then bumping back up to that would seek okay. Sucks man I know you want off this stuff bad.
Posted 8/1/2013 5:39 PM (GMT 0)
Pred zero this week. I had bumped from 5 back to 10 last week, going to see if zero is cool.

I missed navy beans all day yesterday so today I had 2 eggs on olive oiled pan with a side of navy beans. Buttered gluten-free toast with swiss to make an egg sandwhich. Before that was coffee with muffin and then juice smoothie with oats-n-whey. Taking yohimbine and another stimulant to avoid being drowsy.

No complaints.
Posted 8/1/2013 5:45 PM (GMT 0)
so who all is doing the rs thing besides aguy ?
Posted 8/1/2013 7:47 PM (GMT 0)
I was doing the RS but not seeming to help me so far. I get a lot of weird looks when I am eating baked beans at 6 am at work though.
Posted 8/2/2013 1:18 AM (GMT 0)

soystud said...
so who all is doing the rs thing besides aguy ?

Probably very few. I pushed psyllium seed powder a lot but it never caught on until a better salesman promoted it.

The pubmed articles show RS converts to butyrate IF it has time to ferment, you need a normal transit time. IOW if you see beans in your poop it aint gonna work.

RS is shown to thicken the mucosal layer which is a good thing and the only reason why this taper to zero included some really anti-UC foods.
Posted 8/2/2013 1:21 AM (GMT 0)

scum1 said...
I was doing the RS but not seeming to help me so far. I get a lot of weird looks when I am eating baked beans at 6 am at work though.

Are the baked beans soaked in sugar ?

www.shopwell.com/kuners-navy-beans/canned-beans/p/7227313830?f=sr&nr=4482&sp=620

These are what I eat, just beans but great with melted butter or eggs or chili.

Many breakfast burrito's contain beans.
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