Do you think it might be more a prednisone addiction than the Orencia not working? I am also wondering that about myself. I'm putting off trying to wean until I switch to mthx from the Arava. I"m really looking forward to that.

Hmmmm.... will have to look into that...

Some people have to wean down from prednisone very....very...slowly. As in from 5 mg one day to 4 1/2 mg the next, then back to 5 mg the following day (example)....rinse, repeat for a few months. Then go down another .5 mg and do the same.

However, there are those that may never be able to reduce below a certain number because it's the only med that works. And that would be me. I don't really have withdrawals, my body just starts reverting back to pre-meds and the brain fog creeps back in - I would have to quit my job-the brain fog would just be too much!

Huh? Just wondering do you have sleep apnea? If it's a possibility that can cause your symptoms too. I know the RA does and coming off the roids will cause those nasty feelings. And I am certainly not wishing anymore issues for you either but that's how my brain works. It thinks wayyyyy to much.

No sleep apnea that i am aware of. I sleep alone and have never been tested. But it makes sense because I know for ME, sleep is the biggest factor after medication in how well I feel or not. Not the weather and not meh diet...but sleep!

Marlene - i cooke dup Prednisone addiction and all i found was definitions of addition and discussions of the difference between addiction and dependence.

I do NOT think I am addicted to Prednisone. I believe either:

1) The orencia is STILl continuing to build in my system (not 6 mos yet), or
2) I need something else in addition - either MTX or Arava (which I have discussed with my doc)

It is a question of just not feeling AS SWELL as I did prior to the orencia storage. Previously I was in TOTAL REMISSION! Get like a totally normal person (if I didn't look at or bump my hands). Now on my best days i am ACHY. Not in flare up, hot swollen, screaming pain...but achy.

Maybe this as good as it gets at my age and under the circumstances of 6 years on Orencia and then stopping for 3-4 months. All of this are questions I ponder....

BUT I am determined to get beyond 2 days off my 2.5 mg. prednisone. Tomorrow will be a third day OFF! Waited till it fell on a weekend I have nothing to do. Plus my doc said to stay at each interval for 3 weeks. So I have stayed at 2 days off and one on for 3 weeks now and will go to the next step of 3 days off and one on and see what happens!

I've been on Orencia and MTX (25ml/week by injection) for over a year. It took me about 5 months for the Orencia to take full effect so that I could taper off prednisone entirely but since then it's been clear sailing and I haven't had any prednisone in about 10 months and have lost the 20 lbs I had gained while on it. My Rheumatologist says I am in "cruise control". Recently, at the suggestion of my Dr, I've been trying to reduce the dosage of Orencia and am now taking it every 9 days without any ill-effect. Orencia has a "half-life" of 14 days according to the manufacturer.

One thing my Rheumatologist mentioned is that the MTX functions, at least partly, to prevent the development of antibodies to Orencia which would hasten or cause it's eventual failure. You might ask your Dr if taking Arava or MTX would be supportive of the biologic if you can tolerate either traditional DMARD.

Yes, rockery - I HAVE had that discussion with my Rheumy. I am just at the five month point, so i makes sense that weaning TOTALLY is still iffy! And BTW - I take my Orencia in IV infusions - every 28 days. And I stayed in remission for a good couple month after I had to stop!

I wonder how you would do if you stayed on the prednisone daily but reduced the dose. Maybe 2mg a day for a few weeks, then 1.5.

My primary told me she has several patients that take 1mg a day, have for years, and just can't discontinue altogether. Both she and my endocrinologist feel that 5mg a day or less, while not ideal, is usually not associated with severe side effects. I know you are hankering to get off it, but the Orencia may need a bit more time before that is comfortable.

I've pondered that - weaning down in dose from 2.5 rather than skipping days...but as long as skipping days works...I'll keep in doing it that way. Maybe use just 2mg if after 3 days of I am hurting. Unfortunately there is no cut in stone one right way to do it. I've searched the internet. Very little actual practical tips or facts on HOW TO wean, just that it must be done gradually. But there are so many variables. How much did you start with and for how log? What are you wearing TO? Each case is unique so there is no "chart" for how to wean, though someone (maybe Marlene?) did give me some tips that I have followed.

decrease from 10mg to 7.5 mg for 3 days - DONE!

decrease to 5.0 mg for 3 days - DONE+

decrease to 2.5 mg for 3 days - DONE!

for the next couple weeks, take 2.5 mg every 3rd or 4th or 5th day, expanding the number of days between the dose each time. (The is where I am now)

In about 3-4 weeks you should be off.

GOOD NEWS! I am NOT addicted to prednisone. Today was my third day in a row without it and I'm OK. I think I will take 2mg tomorrow....then go another 3 days without any....