Those who had trouble tapering off PREDNISONE how did you overcome it?

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despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/17/2012 6:42 PM (GMT -6)   
I have been on prednisone since August and have become steroid dependent. I have been trying to ween off but everytime my dosage is below 10 all my symptoms return, fast. My symptoms are urgency, extreme left sided pain, mucous, and diarreah.

My symptoms have improved after three weeks of 40 mg of prednisone but I still have urgency and pain. I also just starting Remicade five days ago but have not seen any improvement after my first Remicade infusion.

If you were steroid dependent how did you finally taper off Prednisone?
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning

ManhattanMama
Regular Member


Date Joined Jan 2012
Total Posts : 450
   Posted 3/17/2012 6:44 PM (GMT -6)   
Can you tell us more about your taper? How many mg do you taper each time? How many days before you taper? How long were you at 40mg before you started the taper?
Dx with Pancolitis in May 2005, Severe Proctitis Jan 2012
Maintenance Plan: 2 Colazal three times a day
Vitamin C, Probiotic, Multivitamin, Fish Oil, Folic Acid
Treatment during Flare-Up : Cortifoam, Mesalamine Enemas & Prednisone (40mg & taper) increase Probiotics
Other Supplements: L-Glutamine with almond milk, Peppermint Tea & honey with Chia Seeds
Mother of 2

Carlie
Regular Member


Date Joined Nov 2011
Total Posts : 412
   Posted 3/17/2012 6:46 PM (GMT -6)   
I am currently taking Entocort to help my taper. I am at the lowest dose of prednisone that Ive been on since
September. I taper by 2.5 mg every 7 days and so far so good!

Carlie
50 mg zoloft
Asacol 400mg 2 tablets 4x a day
1 Canasa suppository
Prednisone 40mg daily beginning of November, taper ended January 3, flare
Began Entocort 3- 3 mg 1/9, blood on paper 1/27
Began Prednisone 40 mg 2/18 with Entocort 3- 3mg caps and a hydrocortisone enema nightly

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/17/2012 7:31 PM (GMT -6)   
I have tried to taper four times since August and each time I would go down from 40 to 30 to 25 to 20 to 17 to 15 to 12.5 to 10 and then 9,8,7,6,5. I would stay at each for about a week. If i flare up I go back up to 40mg for two weeks or more if needed.
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1906
   Posted 3/17/2012 7:57 PM (GMT -6)   
Tapering alone is really difficult, you need to awaken your body's natural cortisone so that you don't abrupt your adrenal glands and go into a frenzy of flares.

While tapering...

-consider supplementing yourself with Calcium and Vitamin D (prednisone reduces calcium in your body and Vit. D is a great supplement to get the immune system running smoother)
-Try the SCD diet, or at least restrict foods that promote bacteria overgrowth (yeast, grains, sugars) this was the only way I could successfully taper off prednisone and remain in remission.
-Supplement with live active cultures or probiotics (in VSL, a study was proven to reduce gas and bloating). I believe it's helped me thus far.

Good luck and please please PLEASE get your blood work done, because almost always you could be deficient in something after lowering doses of prednisone!

(My Bones and joints ached for weeks, until I got a blood test and found I was low in calcium, vit. D and iron). I started supplementing the first two and am back to feeling normal! Don't bother with iron supplements unless recommended, too much is poison and its obtainable through most foods.
College Senior, diagnosed severe Chrons/UC - Sept. 2011

Meds: 800mg asacol 3xdaily, NO more prednisone!
Dietary: Aloe Vera Juice, Rainbow Light Multivit, L-Glutamine, Omega3 Fish Oil, Gluten-Free Diet.
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile

Remission achieved in february by the SCD!

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 1776
   Posted 3/18/2012 4:02 AM (GMT -6)   
stereofidelic89 said...

-consider supplementing yourself with Calcium and Vitamin D (prednisone reduces calcium in your body and Vit. D is a great supplement to get the immune system running smoother)

Unfortunately, this supplementation is not going to help much.
http://www.ncbi.nlm.nih.gov/pubmed/8899087
But
Addition of fluoride could help
http://www.ncbi.nlm.nih.gov/pubmed?term=10656205

http://www.ncbi.nlm.nih.gov/pubmed?term=10647595, could be of help
http://www.ncbi.nlm.nih.gov/pubmed/19559158, A review

@ OP,
Sorry, this post is not a direct help to you but could be of use, since you are on long term steroid use.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 240mg for migraine, Migraine episode now at least twice a month,
Ibuprofen 400mg is the only solution (but leads to bleeding). Looking for alternatives.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9606
   Posted 3/18/2012 4:47 AM (GMT -6)   
I think what helped me was 6mp and the addition of an antidepressant. I tapered really slow (1mg a week) while using Rowasa and Cortifoam too.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

beatUC
Veteran Member


Date Joined Mar 2010
Total Posts : 1096
   Posted 3/18/2012 8:09 AM (GMT -6)   
I became prednisone dependent , the only way I was able to taper off was by going on Imuran.
Imuran
Asacol
prednisone as needed

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/18/2012 1:17 PM (GMT -6)   
I am taking vitamin d, calcium, l glutamine, and fish oil.

I have started Remicade to help taper off the prednisone but havent seen any difference and am starting to consider starting 6mp or imuran.

How long did it take for the imuran to kick in and help you taper?
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9606
   Posted 3/18/2012 2:20 PM (GMT -6)   
It took a very long time for me. I was not one fo the lucky ones but some do see results in as little as a few weeks.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1906
   Posted 3/18/2012 3:06 PM (GMT -6)   
deltaforce said...
stereofidelic89 said...

-consider supplementing yourself with Calcium and Vitamin D (prednisone reduces calcium in your body and Vit. D is a great supplement to get the immune system running smoother)

Unfortunately, this supplementation is not going to help much.
http://www.ncbi.nlm.nih.gov/pubmed/8899087
But
Addition of fluoride could help
http://www.ncbi.nlm.nih.gov/pubmed?term=10656205

http://www.ncbi.nlm.nih.gov/pubmed?term=10647595, could be of help
http://www.ncbi.nlm.nih.gov/pubmed/19559158, A review

@ OP,
Sorry, this post is not a direct help to you but could be of use, since you are on long term steroid use.


Ehhh... I dont really trust that. Fluoride is actually dangerous to the immune system in large amounts, we really should not even be using it in toothpaste because it does cause cavities, and suppresses the immune system.

There may be no significant difference when individuals take calcium supplements while on prednisone, but this could be because pred. is such a strong medication that it wipes the body clean of its natural supply of vitamins and minerals. However, when coming off prednisone I think its important to readjust your body by supplying it with essentials that were lost. This is what my doctor recommended.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 1776
   Posted 3/18/2012 3:44 PM (GMT -6)   
Hmm, Its your call. Although I am a scientist and still doesn't believe in all the research available on Pubmed, this thing convinced me so thought of putting it here for someone who could benefit. Calcium absorption is not straightforward as we have been told. Even those who eat more salt lose more calcium (I wonder how many know this, even the doctors.) but as I said, its the user's call..
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 240mg for migraine, Migraine episode now at least twice a month,
Ibuprofen 400mg is the only solution (but leads to bleeding). Looking for alternatives.

uc-logic
Regular Member


Date Joined Oct 2010
Total Posts : 138
   Posted 3/18/2012 5:43 PM (GMT -6)   
I was unable to taper below 30mg of Pred when I was having trouble, what I ended up doing was every 10 days I drop 2.5mg, take that for 4 days then drop the other 2.5mg. I was also taking T3's for pain.

I think you just need to let the Remicade take it's time and see how that goes, you might not notice anything to quickly but hopefully you will start to see improvement by your second dose. Taper the pred slowly or stop tapering for a bit so you don't flare while starting the remicade.

I go for my second infusion tomorrow, I noticed very small improvements during the past 2 weeks, but even more today, hopefully after tomorrow I'll be notice more of a difference.

Good luck and don't rush things.
Starting Remicade March 5th 2012
Multi Vitamins

Been on: Asacol, Sulfasalazine, Prednisone, Imuran

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/18/2012 5:57 PM (GMT -6)   
UC-Logic it seems like you have as similar of symptoms and troubles as me. Im really having a tough time dropping any dosage of prednisone and have lost some hope after not seeing results after the first infusion. But after reading that you are seeing improvements gives me some hope.

I am at a war with myself because I have been on the prednisone for so long that I am scared of the effects it is doing to me. So I still want to get off of it as fast as possible.

Please let me know how you are doing after the second infusion. My first infusion was 2.5 and maybe it was just too low of a dosage to do anything.

Also whats a T3?

Post Edited (despi) : 3/18/2012 7:58:42 PM (GMT-6)


uc-logic
Regular Member


Date Joined Oct 2010
Total Posts : 138
   Posted 3/18/2012 8:55 PM (GMT -6)   
I will let you know how I am getting along a few days after my infusion tomorrow. I certainly understand your want to get off the pred, I also worry about the long term effects. It's been hard to do these slow drops, but I force myself to keep it slow since I've had such a hard time. It was worse waiting for my insurance to say they'd cover Remicade, it was 3 months pretty well of waiting for them and me being stuck on pred since nothing else was working. I'm finally down to 10mg going down to 7.5 on Wednesday.

T3 being Tylenol 3's, just a strong form of Tylenol with a codeine, I was often taking 2 every 4 hours.
Starting Remicade March 5th 2012
Multi Vitamins

Been on: Asacol, Sulfasalazine, Prednisone, Imuran

bootstrap
Veteran Member


Date Joined Nov 2009
Total Posts : 579
   Posted 3/18/2012 9:58 PM (GMT -6)   
Also prednisone dependent here. Just went back on it for the third time this year, but also just started Imuran to try and maintain remission this time. Not much to tell yet - just started both two weeks ago and have only seen mild improvement. I know the Imuran can take a couple months though, and I was always slow to respond to pred - takes me a few weeks to start seeing significant improvement. Last round I was on full doseage for six weeks before I started the taper. If you want to hear more detail on it all, check out my blog by clicking on the link below.

Hopefully the Remicade will help you... sounds like we're pretty much in the same boat. I will be trying Remicade if the Imuran doesn't work. Good luck. (To all of us!)
Follow my story: ronnielee-fightingforit.blogspot.com

32-year-old single female (teacher)
Dx mild/moderate ulcerative colitis 1995
Dx severe ulcerative pancolitis 2011
Imuran (tapering on), Prednisone (40mgs), Asacol HD (4800mgs), Mesalamine Enema, MMJ

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2339
   Posted 3/19/2012 12:10 AM (GMT -6)   
Body makes 8mg until you start supplementing prednisone

Cut the pills up and ease your way down to zero over a long period of time.

Ride the brakes from 8mg on down so your body can start making it without the shock effect interfering.

uc-logic
Regular Member


Date Joined Oct 2010
Total Posts : 138
   Posted 3/20/2012 5:06 PM (GMT -6)   
Just thought I'd let you know I was feeling better yesterday before the infusion and even better today. Almost too good, I think I over did stuff today, still fine, just wore right out.
Starting Remicade March 5th 2012
Multi Vitamins

Been on: Asacol, Sulfasalazine, Prednisone, Imuran

machina12
Regular Member


Date Joined Feb 2012
Total Posts : 214
   Posted 3/20/2012 5:52 PM (GMT -6)   
Why kind of side effects occur when y'all are down to 10mg and below? Also what about when completely off? I just went from 40 to 30 and have joint pain/muscle cramps. Will I get used to it or does it just get worse each taper?

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/20/2012 5:54 PM (GMT -6)   
Thanks for letting me know! I have been doing slightly better each day but I think it is because of the prednisone and not the remicade. Feel free to keep updating on how your doing
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/20/2012 5:56 PM (GMT -6)   
When i get down to 10 mg and below my symptoms slowly start to return. Ill get really bad gas and then come the stomach pains and before I know it Im in a flare.

My joints ache when I taper as well but its not anything to severe. I think it will get better as you taper its probably worse when your dosage is higher
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5400
   Posted 3/21/2012 9:47 PM (GMT -6)   
      Hopefully, Remicade will start working and you will be able to wean off the prednisone.  I was prednisone dependent for two years prior to my surgery.  I hoped that Remicade would have been my miracle drug, but it was not to be.  I then gave Humira a shot for three months..but, nada.  Surgery was not a walk in the park, however, I have my life back without those drugs.

allswell
Veteran Member


Date Joined Oct 2011
Total Posts : 654
   Posted 3/21/2012 11:22 PM (GMT -6)   
Am also steroid dependent, Remicade did not work for me, but that was decided after three infusions. Why didn'tbthey try I imurarn first?
proctitis 2004, Asa sup., 2006 hydrocort sup. worked for a while when I remembered to use them, 2009 spread to left put on prednisone, asacol, then Apriso. Switched docs tried lialda, rowasa, back to hydro enema and Apriso. 2010 6mp added, 2011 pancolitis ,Remicade, bad flare after no.1,2, pred now, and rem

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5400
   Posted 3/22/2012 8:07 AM (GMT -6)   
     Allswell, I forgot to mention, I WAS on 6MP for eight years, starting in 2002 when my third flare began.  It only kept me in a 1 yr remission, then I started to flare twice a year.  In 2008, I was hospitalized for the UP and extremely high BP.  My pancreatic and liver enzyme levels were off the wall and my doctor took me off the 6MP for about a month.  When my enzyme levels returned to normal....back on the 6MP again.  I was constantly flaring by then and prednisone dependent.  That is when I tried Remicade and it failed after my 3rd infusion.  Humira failed too sad .  Finally, I waved the white flag.  If the disease didn't kill me the meds were doing a good job of trying to.

despi
Regular Member


Date Joined Dec 2011
Total Posts : 44
   Posted 3/22/2012 2:42 PM (GMT -6)   
Christine1946 what kind of surgery did you have and what is your bathroom routine like now?
20, University Athlete, diagnosed with UC in March 2011
Asacal 6 pills
Remicade infusion 3/13
Prednisone 30 mg (been trying to taper of since August but symptoms return everytime I go to below 10mg.)
Mesalamine enema at night
Canasa Suppository in the morning
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