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

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?

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

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.

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.

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?

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.

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.

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.

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.

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?

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

Am also steroid dependent, Remicade did not work for me, but that was decided after three infusions. Why didn'tbthey try I imurarn first?

Christine1946 what kind of surgery did you have and what is your bathroom routine like now?