Any reccomendations while tapering Prednisone?

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Nolan
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/23/2008 11:10 PM (GMT -6)   
Currently I am at at 25mg daily of Prednisone (tapering down 5mg every 4 days) and I am starting to see signs of a flare up. This is my second time trying to taper off of Prednisone (I have been on Prednisone for about a month and a half now 40mg Daily) the first time failed miserably and put me into one of my worst flare-ups ever. In response to that my GI prescribed Imuran two weeks ago and kept me on the Prednisone. I am now on 100mg daily of Imuran, and from my understanding it takes 4-6 weeks for it to kick in but I really need to get off of this Prednisone because of how long I have been on it.

How can I avoid a flare up while waiting for Imuran to kick in as I ween myself off of my Prednisone? Does anyone have past experience with this sort of problem? Today I have started Asacol and Rowasa again to see if that produces any results, it has helped me in the past but had stopped working a two months ago which is why I went on Prednisone in the first place.

Thanks!
Nolan.
Nolan - 18 Years old
Diagnosed UC - February, 2008.
Meds:
Prednisone - 25mg Daily (Tapering from 40mg)
Imuran - 100mg Daily
Pepcid - 80mg Daily
Multivitamins
Calcium + Vitamin D
Asacol - 1200mg Daily

Currently - On the borderline of flaring up.


Florence
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/24/2008 12:44 AM (GMT -6)   
Hello Nolan-
 
My 16 year old son was on Entocort, a milder form of Prednizone for 10 months.  You are not supposed to be on it for more than 6 weeks.  Every time we tried to wean him off, he would flare up.  The harsh drugs the Dr. was wanting to use on my son as an alternative were very undesirable due to side affects.  So, in desperation we put my son on the specific carbohydrate diet.  First we just took him off of all sweets, gatorade, koolaid, sodas and within a week we saw results.  His stool got better.  So we went all the way with the diet.  To do this though Nolan you really need the support of a parent who  is willing to cook for you unless you are doing that all for yourself now.  I bought 2 cookbooks that I would recommend called Recipes for the Specific Carbohydrate Diet by Raman Prasad and Eat Well Feel Well by Kendall Conrad.  The baked goods are somewhat disappointing unless you can consume the item totally upon leaving the oven.  The crackers are good to start with for baking though.  If you decide to do this the diet recommends going easy the first 3 days, eating baked chicken, cooked veggies like cooked carrots, tender fish if you like that.  Look up the diet on line and you will get a wealth of information.  There is also a list if legal and illegal foods that you can consume on this diet which is a very helpful resource. 
 
I should mention, that my son's ESR wasn't below 25 for 10 months until we started this diet.  He also ate a yogurt smoothie every morning for breakfast with 3 scrambled eggs and cheese.  Yogurt gives you that good bacteria.  He never cared for yogurt but a smoothie with frozen sliced bananas, some honey, and a cup of yogurt in a blender was managable and good enough to him.  You do need to make your own yogurt if you go serious with this diet.  Lucy's Kitchen Shop on line can help you obtain that along with the starter enzymes needed to ferment the milk you heat on the stove. 
 
I'm sure I have given you more information than you need but I want to give you hope. 
 
My son was diagnosed with Crohn's disease 5 years ago at age 11 and he is now 16.  A week after this diet his diarrhea had stopped.  A month after this diet his ESR was 5.  Two months after we got on this diet he had a week of what we thought might be a relapse but what I read said there is a sluffing off period in your gut that you can expect around two months so I figure that was what it was.  Two months after starting the diet his ESR was a 2.  He has been on the diet now 3 1/2 months and he has no symptoms.  He is only on Pantasa, 6 pills a day.  The Dr. said he could go down to 4 but my son seems to feel more secure with 6.  Pantasa has never been enough medicine for him.  I anticipate he can get off meds completely after being on the diet 6 months if the Dr. says go for it.  What baffles me is that he has no symptoms, no fissures, no stabbing pain, no diarrhea, no joint pain, no exhaustion, no fistulas.  He has been taking Lysine for the past 2 years for fissures and that has done wonders.
 
Hope is a good thing, especially when there are so many people out there that back this diet. If you ever read Breaking the Vicious Cycle by Elaine Gottschall, ( a nutritionist who had a child with Crohn's ) she says once you are on this diet for a year without any symptoms, you can cautiously start eating carbohydrates again gradually.  Some people stay on this diet forever, afraid to go back eating breads, rice, potatoes.  Elaine's daughter did though in moderation and she has been fine for years, medicine free.  The idea is that somewhere along the line you got ahold of bad bacteria that found a home in the lining of your gutt.  Antibiotics won't kill it.  Sugars and starches feed it and keep it alive.  By being on this diet you are starving this bacteria and while your cells in your body are replacing themselves over time, this bacteria dies out. 
 
Wish you the best as you ponder all of this. 
 
Florence 

ErinD
Regular Member


Date Joined Jul 2008
Total Posts : 94
   Posted 9/24/2008 10:56 AM (GMT -6)   
Hi Nolan,
I am currently trying to wean off of prednisone as well, however i have been on it for 9 months so far, so don't worry too much yet being on it for a month. I tried 5 times to wean off and kept getting into a flare anythime i went under 10mg. My doctor tried combining it with Entocort (didn't work) as well as Asacol (made me sicker with side effects, i can't tolerate it). My doctor has recently put me on 6-MP and once my system is utilizing it he is going to try and taper me again from the prednisone. So far i am feeling pretty good and i am looking forward to when i can get off of prednisone as it is such an evil drug. My only suggestion for you is to try and taper really slowly...and if that doesnt work ask your doctor for other suggestions.
Diagnosed with UC 3/2008
10mg Prednisone
75mg 6-MP
Entocort 9mg daily
800mg Asacol 3X daily


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 479
   Posted 9/24/2008 11:42 AM (GMT -6)   

Nolan

I wouldnt fret about being on pred for 6 weeks.  I have been on it for 4 years.

You will need to wait until the Imuran kicks in before tapering. I would also suggest going down in 1mg or 2.5mg increments.  IMO, 5mg drops are too big, hence you flare when you drop.

Also, I would start on the steroid enemas.  They will help soften the blow and have WAY less side-effects.

Best of luck


Abatacept Trial since Feb 2008 (Maintenance Period)
Back on Pred - 1mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


Nolan
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/24/2008 1:35 PM (GMT -6)   
Wow and I thought I was pushing it at 40mg daily for this amount of time. What is the maximum time-frame and MG that is safe to be on Prednisone?
Nolan - 18 Years old
Diagnosed UC - February, 2008.
Meds:
Prednisone - 25mg Daily (Tapering from 40mg)
Imuran - 100mg Daily
Pepcid - 80mg Daily
Multivitamins
Calcium + Vitamin D
Asacol - 1200mg Daily

Currently - On the borderline of flaring up.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/24/2008 3:16 PM (GMT -6)   
taper as slow as you can so you don't have to go back up to a high dosage again. I have been on it a year for another issue but also helped my uc.

My last taper I did by 10mg a week from 40mg until I got to 20mg then I tapered by 5 to 15mg and stayed there for two weeks and stayed at 10 for two weeks and 5mg for a month and now I am doing 5mg for two days then 2.5mg then back up to 5. Next week I am going to do 5mg and 2.5 every other day. Next month I will do 2.5 every day and the month after that will be 2.5 every other day.

I would try to taper by 2.5mg every 2 weeks.

Also after I taper I get a small amount of blood a few days later but then it goes away.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


cycling_sasquatch
Regular Member


Date Joined May 2007
Total Posts : 169
   Posted 9/24/2008 4:08 PM (GMT -6)   
I stayed at a higher dose of Pred. after I started the Imuran. Like 40 for a few months. I flared up 2 times while trying to come off the prednisone, and both times increasing the Imuran dosage. Finally at 200 mg Imuran I seemed to be able to come off the prednisone completely. It is kind of a guess as to how much Imuran you will need, and only until it starts working will you be able to get off the pred. completely. But you will I'm sure. Don't worry about being on it too long (unless you start counting the time in years!)
UC diagnosed Dec. 2006
Azathioprine 200mg/day
Multivitamin, fish oil, fiber supplement, Nature's Way Primadophilus Optima, Digestive Advantage Crohn's & Colitis


DDR11
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 9/24/2008 4:19 PM (GMT -6)   

I am also in the process of trying to taper down from 30mg of Prednisone.  I have been on it since May 5th.  The last two times trying to taper down, by the time I got to 20mg...I started to flare back up.  about 4 weeks ago, they put me on Imuran.  However, I have had frequent fevers and been in the hospital once since starting the Imuran, so they have stopped it.  My doctor thinks I am having an allegric reaction to it....ughhh!  Anyway, last week they took me down to 27.5mg of the Prednisone.  So far so good.  However, any little discomfort I have in my colon, the first thought that comes to mind it is coming back.  I am trying to not worry myself about it, because I know that doesn't help the situation...but I think it is a learned response now.  :(

Hopefully, if all goes well I can go down to 25mg on Tuesday next week.  I am praying that I can taper down with no problems, because they are talking about Remicade next.  Good luck on your taper.  I hope that the Imuran works for you and you are succesful.  I really hate to see so many people suffering from this crappy disease. 

 


Have had UC since 1998. 
 
Current Meds:
Prednisone:  27.5mg
Imuran:  100mg
Rowasa: Nightly
Asocol:  3600mg/day
 


Nolan
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 9/24/2008 4:54 PM (GMT -6)   
Thanks for all the help and support everyone, it means a lot.
Nolan - 18 Years old
Diagnosed UC - February, 2008.
Meds:
Prednisone - 25mg Daily (Tapering from 40mg)
Imuran - 100mg Daily
Pepcid - 80mg Daily
Multivitamins
Calcium + Vitamin D
Asacol - 1200mg Daily

Currently - On the borderline of flaring up.

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