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Posted 5/2/2012 8:58 PM (GMT 0)
Hi guys
Im constantly browsing this forum and ive posted a few times when i was dxd last year and im in need of some advise again.
Ive never really had bad symptoms like diarrhea and weight loss or have i been hospitalised but ive never had remission either! my last trip to the gi got me on salofalk enemas, pred enemas and asacolon by mouth. he also gave me a script for predisolone that i was determined not to touch. i gave the new regime 3months, it worked for a week or so and then the blood and mucous came back.
I seen my gp who assured me i'd be ok on the pred as it was only an 8wk stint starting at 40mg and tapering weekly down by 5mg.
Well after a few days it worked and i felt alot better too.
but after tapering to 35mg the blood came back and after tapering to 30mg the mucous is back also.

So what will happen now. will i have to stay on 40mg or will i have to try something else.

also ive never asked this question. is this constant inflammation and bleeding doing me any harm. can i go on with just blood and mucous as long as it doesnt spread. i reckon i could live with that.
Posted 5/2/2012 9:38 PM (GMT 0)
I know for me, each time I went down on pred, I did have some symptoms come back for a few days. I am pred dependent and still on while waiting for the maintence drugs to kick in. What are you going to do for maintenance?

You do not want your colon to be constantly inflamed and bleeding. It increases your chances of colon cancer that much more!
Posted 5/2/2012 11:47 PM (GMT 0)
I had what they call steroid refractory UC. What that means is my UC only responded to (and not even that well) high doses of steroids like 40 to 60mg. As soon as the taper would start...the symptoms came rushing back. Obviously I couldnt stay on that dose all the time. Long story short for me, all the other meds failed and I had to have surgery but the point is you may need to move on to another treatment plan. A high dose of prednisone is just bad, bad news long term. You need to discuss other options with your GI. Best wishes.
Posted 5/3/2012 12:16 AM (GMT 0)
jujumcm,

I was in the same boat a few months ago but it took me 8 full weeks at 40mg to control my symptoms enough so I could begin to taper. I had horrible side effects from the pred that continued while I tapered. Each time I tapered by 5mg I would get a few looser stools, a little blood and more frequency for a few days. I waited for 5 to 7 days and for my symptoms to clear up before tapering again. Now after 4 months I am only down to 7mg and my colon has not healed. I need to take Ambian to sleep and Tylenol 3 for pain. I had all these meds!

I learned at my flex sig yesterday that the pred can help with the symptoms of UC but it really doesn't do anything to help heal the inflammation of the colon. My case is moderate to severe up to 25cm and the rectal meds are not helping too much either. I have decided to step it up another notch and try Remicade.

If you are able to tolerate the pred just try doing a slower taper to see if that helps. Hang in there and hope you feel better soon :)
Posted 5/3/2012 7:44 PM (GMT 0)
gottago,

my gp said for me to just take the steriods and asacolon. im on 1600mg of asacolon daily and im on 30mg of the pred.. tbh my colon does not like the salofalk enema at all. it just wants to come straight back out again. gives me bad cramps. i was also on pred foam daily but my gp said that was too much steriods.

manhattanmama,
i was speaking to colorectal nurse earlier and she's gonna get back to me morro. i wanna get of the pred asap cuz im already getn weird stuff happen. like the shaking and the mood swings. i can see your point though on slowing the taper. it makes good sense but i would dread becoming dependant on a high dose for mild UC.

byebyeuc,
im hoping they decide on another treatment plan for me and NOT staying on pred. kicking myself now for going down that road.

Thanks for all your replies and sorry for the slow response. we are in different time zones.
Posted 5/3/2012 8:15 PM (GMT 0)
HI, goodluck predisone is weird ,i ask myself everyday why i  take it and  if when your off/or tapering it flares again... which i didnt know before i started it, and i didnt know basically anything less than 40 doesnt do much or that i'd end up on it for months . i currently am sticking to my taper no matter the syptoms or recurrence or symptoms . i just dont want on it.  hope you find a treatment plan that works and your comfortable with .

manhattanmama- why is predisone even exist if it doesnt do anything but "mask the problem" no wonder it FLARED crazy when off it!!! this pisses me off

Posted 5/3/2012 9:45 PM (GMT 0)
sheila,
that sounds like an excellent plan.
just taper anyway and get of the cursid stuff. my hubby said i looked like some1 on drugs earlier (the illegal kind!!). im on some kinda high for sure just whats gonna happen when im come down from it. yikes!
Posted 5/3/2012 11:38 PM (GMT 0)
I AM WORRIED about THE END "COME DOWN" AS WELL ....
HANG IN THERE
Posted 5/4/2012 12:47 AM (GMT 0)
jujumcm,

I understand your frustration.

I've been there too, when all the meds failed me.

If you're interested in taking things into your own hands, I would suggest adding certain supplements for colonic repair, doing diet modification, and adding probiotics.

For more details, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

Good luck and I hope you start to feel better.


Posted 5/4/2012 2:23 AM (GMT 0)
INSOFLA - have you heard of anyone getting remission on ldn AND then flaring again? what r the odds? and if you know off the top of your head is there a preference to at what stage to start LDN , like at 10 mg pred vs 30mg ? you know what i mean?
Posted 5/4/2012 6:04 AM (GMT 0)
I have heard of people flaring on LDN Sheila. Some of them drop down their dose for a while and the up it to sort of kick start it to work again. I'm on the yahoo LDN boards, you should join it and ask some questions over there. I'm so glad LDN worked for InSoFla and others but I had huge hopes for it and so far it was not what I was hoping. That being said I wonder if it's doing something now that I've been on it for a while. Some people say it takes a while to see the benefit, plus you need to have your flare under control for it to work for some people. I think it helped InSoFla to attain a remission but Skip has said that it won't really bring about a remission for most people. You need to get the flare under control with something like Prednisone first. So there is a timing thing for it to really work. It's sort of a complex thing....

Jujumc
I hope you find something that works for you. I'm in sort of the same boat. I can't take Mesalamine in any form so I like you am searching for answers. I know we need to control this inflammation because long term it is causing us harm. The trick is to find the most effective treatment you can tolerate without getting sick from the treatment. Not an easy task....
Posted 5/4/2012 6:29 AM (GMT 0)
I entered a 10 year med free remission once after over 2 years of pred on and off high doses... i have a hate/love relationship with it. I use it when needed but I do try and get off- at the same time, though, once committed to using it I find I can minimize exposure by makng sure I damp symptoms enough to let my much weaker, dietary and supplement (and mesalamine if you, unlike me, can tolerate them) therapies have a hope of making progress. But for my first UC years, I knew nothing of alternative therapies, so the pred that I hated was nevertheless what got me into a poweful, robust full 10 year med free remission (in those days the only UC meds we pred and mesalamine) which was ended only by tragic, ignorant exposure to antibiotics on my part. For what it's worth, My snooping and research (contrary to most GI's) from books such as "the safe use of cortisol" by dr. jefferies (google it), indicates that low dose pred has a negligable toxicity as it replicates physiologic doses of cortisone- long term toxicity is from higher Doses, IMO- however I agree pred should be avoided if possible and always strive to be off pred, and like I said- I hate it and love it...

hey seasons21- I am currently flared on LdN after a 10 month remission after starting it- I guess I should come over to the LdN boards to look into this stop/restart technique. i have stopped it for 6 days now and am abaout to restart- hoping that technique will help me get off pred soon (currently tapering through 20 mg).

Post Edited (Probiotic) : 5/4/2012 12:36:55 AM (GMT-6)

Posted 5/4/2012 5:44 PM (GMT 0)
I had heard of many instances of people while flaring going on LDN and being helped, but not of anyone who was NOT in a flare and started LDN and then flared as a result.

Is that what you are asking?

Posted 5/4/2012 7:15 PM (GMT 0)
probiotic - thanks for sharing :)
insofla - i got it ;)

HAVE A GOOD DAY YOU GUYS !
Posted 5/4/2012 10:07 PM (GMT 0)
Probiotic,

Good luck, I hope it starts working for you again.

BTW, did you ever get the vivid dreams? Not everyone does.

But the reason I am asking is because that would be one way to tell if when you re-start the LDN, it works.


 

Posted 5/6/2012 8:45 PM (GMT 0)
Good news. the colrectal nurse rang me on friday and she said i should taper of the pred quicker. drop down every 5 days. im so glad cuz i thought she might suggest me staying on 40mg for longer. na she said theres no point if there not working. phew. shes booked me in for a flex sig to see whats going on. she talked about starting a new drug regime. she mentioned injections or a drip. seems a bit extreme imo. ill have to do some research. any1 know what drugs she could be talking about?
yeah
thanks for the advise every1. def gonna check out some alternatives for myself also.
Posted 5/6/2012 9:35 PM (GMT 0)
juju,

I'm curious as to what new meds she'll be putting you on.

def gonna check out some alternatives for myself also.

If you are interested in the alternative regimen which put me in remission, you can check this link out:

https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Good luck, and I hope you start to feel better very soon.

Posted 5/6/2012 9:46 PM (GMT 0)
thanks a million insoflora
Posted 5/6/2012 9:53 PM (GMT 0)
Humira is injection and Remicade is the IV drug.
Posted 5/7/2012 2:24 AM (GMT 0)
InSoFla- Thanks- just started up LDN again last night and low and behold had a vivid dream... Here's indeed hoping it's a good sign. Feeling better than I have in days in spite of my fast 10 mg per 2-3 days taper (btw I am only tapering this fast because I never allowed a full blown flare to gather steam (never got full blown D, just got to mushy stage, now well formed again, and have barely touched pred in a year.). If (big knocks on wood) LDN starts helping again then I am going to follow your protocol of taking two days "off" LDN every 2 weeks.
Posted 5/7/2012 3:21 AM (GMT 0)
Probiotic,

Vivid dreams - sounds like it's working.

I am so glad.

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