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Droped to 20 on pred and symptoms returing?

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Posted 6/18/2013 8:24 PM (GMT 0)
Did you ever try the sulfate-free enemas? They might work better.
Posted 6/18/2013 8:36 PM (GMT 0)
slower decreases worked for me by 2.5 mg a week until I'd get to 5mg then I'd flare within a month I was on imuran at the time which apparently never really worked, now on remicade.
Posted 6/19/2013 1:13 AM (GMT 0)
hey scum,
Was just wondering earlier today how you were doing, seeing we shared similar stories..
I'm done to 20 now too and doing well (thankfully). I was told drop 5mg per week... I'm very eager to get off so I'm modifying it a bit myself.. prepared to slow down if needed..
Basically I stick to a dose for 5 days and then day 6 (and sometime 7) I go down 2 1/2mg just to ease it on the body.. I may slow more once at about 10, but from60 to 20 i was comfortable with that. I do notice a day or two of 'different' bm's each drop, but not bad and just stick with it.. body adjusts.

When did you drop to 20? today? a few days ago? maybe go back up to at least 25 for a few days but make sure you can get prescription refilled if you are playing with dosing as you may run out...

My Remi seems to be working ok but I'm curious to see what life is like once off prednisone and JUST on REMI.
Posted 6/19/2013 1:33 PM (GMT 0)
Jesus, dude, why do I always agree with you? Starting to feel like a stalker... >_>

But yeah, I would say the same thing. Always get off Pred ASAP. It's toxic stuff, it really is. The thing about Pred is, it's the ultimate symptom-suppressor but it doesn't lead to mucosal healing. You can spend years on Pred without touching the underlying disease. I pissed about for a year and a half on Pred, getting more and more steroid-dependent (ie symptoms would return increasingly earlier). When I finally could not get off Pred at all, or even taper down, I booked surgery. The pathology report of my colon showed severe pancolitis and transmural inflammation.

Staying on Pred for longer than a few weeks will do you absolutely no favours at all. It won't make your disease any better. If you cannot find another med or therapy to control your symptoms, and your disease is too severe to live with, then you will ultimately need surgery. Pred will do literally zero to avert this outcome.
Posted 6/19/2013 2:23 PM (GMT 0)
I'm almost on the same pred reduction cycle as you canadagal and you scum. I'm about to start my week at 30mg today and am going from splitting my dose to just one dose. What time of the day do you two take the pred when its only one dose? I was thinking about doing it around 2pm or so. When I was taking split doses I would take it at 8am and 8pm. Thanks!
Posted 6/20/2013 12:16 AM (GMT 0)
I'm bumping back up to 30 tomorrow for a week then will taper down to 25 for 2 weeks then 20 for 2 weeks and so forth until I get off of it. Not what I want to do but I think the drop from 30 to 20 was just too much
Posted 6/20/2013 1:11 AM (GMT 0)
i've only ever taken 1 dose a day Dude35 and always in the AM (7ish)
scum do what feels right to you, but again make sure you will have enough prescription to make it last..

I'd say if you feel stable for 5-6 days, you could drop 5mg or 2.5... 10 is a lot, but you also don't want to drag it on forever... wait to see how your body reacts give it 2-3 days to settle and then 2-3 days to see if stable... then ok to drop.

You should also let your gi know. when is your next apt?
Posted 6/20/2013 1:17 AM (GMT 0)
I'm going to call my GI tomorrow to make sure my prescription is increased and to let them know. Next appointment is months away. I'll have another dose of Remi before then.
Posted 6/20/2013 1:45 AM (GMT 0)
When i was dropping from 40, even at 5 mg, my symptoms returned because i was tapering every 4 as instructed by my doctor. I got the symptoms when i got down to 20 mg. I had to return to 40 mg and taper more slowly at some points even by 2.5 mg.
Right now i'm just a few more days at 2.5 mg
Posted 6/20/2013 7:48 PM (GMT 0)
Somedude, look at the longterm picture. An inflammed colon and flaring makes cancer more of a likelihood down the road. Try to tamp it down with pred or whatever else works.
Posted 6/20/2013 10:25 PM (GMT 0)

journey2health said...
Somedude, look at the longterm picture. An inflammed colon and flaring makes cancer more of a likelihood down the road. Try to tamp it down with pred or whatever else works.

Bad idea.

The only thing worse for you than long-term UC is long-term Pred.

You don't 'tamp' the disease down with Pred. It literally does nothing except suppress the symptoms. I was on the stuff for a year and a half, had surgery, and my colon was still severely inflammed.

Basically, Pred for longer than a few weeks is a bad idea. Always.
Posted 6/21/2013 12:26 AM (GMT 0)
Long term prednisone use is much worse than just living with UC. There are so many ways it can destroy your body even taking off your shoes couldn't count them all.
Posted 6/24/2013 6:05 PM (GMT 0)
Well only a few more days at 30 then Thursday I'll go back down to 25. I am definately feeling the effects of the 30 after a few days. I'm doing better UC wise but sleep wise and mentally not so much.
Posted 6/24/2013 6:07 PM (GMT 0)
I usually split my dose. Right now I been taking 20 mg in the morning and 10 more at noon.
Posted 6/24/2013 6:19 PM (GMT 0)
Good your UC is calming...sucks about the mental stuff. That wouldn't have me in a good state at all.

Did you get the rest of your tattoo done? Looking forward to another pic..;-)

q
Posted 6/24/2013 6:41 PM (GMT 0)
Long day today as I really could not sleep last night and when I did had crazy dreams. This Moon face is also driving me crazy. I feel like I have a basketball for a head.

Yes I finished the tattoo on my back and added a bunch to the tribal on my right arm. I'll get some photos up tonight when I am home.
Posted 6/24/2013 6:47 PM (GMT 0)
Wow, those types of dreams seem to never leave the mind, especially after a night of sleeplessness. Basketball head would totally be distressing. How's your appetite? Still doing midnight feasts?

Looking forward to the pics....!!! thanks!

q
Posted 6/25/2013 1:10 AM (GMT 0)
The new skull/fire in our throats will beckon the thaw
http://i5.photobucket.com/albums/y173/scum1/DSC04302_zps9346ac1a.jpg
http://i5.photobucket.com/albums/y173/scum1/DSC04301_zps2ba41dc6.jpg
http://i5.photobucket.com/albums/y173/scum1/DSC04300_zps0d173f6a.jpg
http://i5.photobucket.com/albums/y173/scum1/DSC04296_zps89a9a5a3.jpg

The add on to the tribal
http://i5.photobucket.com/albums/y173/scum1/DSC04298_zpse0f9a0ad.jpg
http://i5.photobucket.com/albums/y173/scum1/DSC04297_zpsf28e3492.jpg

The original left arm tattoo from when I found out I had UC
http://i5.photobucket.com/albums/y173/scum1/tattoofinal.jpg
Posted 6/25/2013 11:06 AM (GMT 0)
Another night with little sleep. Glad I'm off work tomorrow. O and darn I'm hungry lol
Posted 6/25/2013 11:50 AM (GMT 0)
I'm getting about 6hrs per night now... I'm at 15mg's and eager to get off the roids.

still eating like crazy too.... other wise been lucky with side effects. No too much going on. a bit of puffyness but not like last time (moonface, belly). Got energy but not crazy restlessness. A touch more emotional, but not bursting into tears. No heatflashes. Some facial hair but since I'm blond, barely shows. Minimal head-hair loss. A few headaches mostly when I drop my doses.

Colitis doing very well. Down to avr. 2 BMS - nearly normal looking! YAY!

HOpe you can drop Pred. again soon without issue scum.
Posted 6/25/2013 12:30 PM (GMT 0)
Me too. The difference between when I was on 20 mg and now the 30 mg is huge especially mentally. I am so tired of looking like a sausage with a basketball for a head. Kind of depressing
Posted 6/25/2013 12:35 PM (GMT 0)
RS diet. Eat navy beans with every meal - heals with butyrate. Raw Adrenals help too. I can come down 10mg or more this way each week but need to remain strict about sugary foods after zero because the adrenals remain inelastic after fast taper off and you either take it easy on them for next 2 months or have 5-10 on bad day even after a week or weeks of zero is what I have learned.
Posted 6/25/2013 12:43 PM (GMT 0)
I been meaning to do the RS diet thing but was waiting until the flare subsided some. Maybe I'll go ahead and start it.
Posted 6/25/2013 3:33 PM (GMT 0)
The tattoos look great. You heal amazingly well!!! considering you're on pred and were flaring and in the hospital previously.

Love the skull finished, and the tribal looks perfect too. What was did it cover, or what was it originally (you said added on to).

Thanks for posting them!

Hope you have a better week with more sleep.
q
Posted 6/25/2013 4:00 PM (GMT 0)
Under the skull was a tiger (much smaller and faded) and the tribal is not covered. He just added a lot to it. The middle was there and he extended it until it was half a sleeve. I was worried about the healing with me being on Remicade and all but it all worked out good. I was carefull and took good care so they healed well.
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