Leaving the Pred Zone

[Alias]

After a 1.5 year taper from 60 mg of prednisone, I am now at the ridiculous dose of 1mg per day. After 30 days I will be off of it entirely. Then the only GPA related drug I will be taking is .8ml weekly injections of MTX, plus Leucovorin to counter the hepatotxic effects of MTX, plus folate, plus steroid and antibiotic nasal rinses... but basically it seems I am in a solid drug induced remission. My hearing impairment is of course there for good, plus my "good" ear is subject to feeling plugged up and my nasal passages are always messed up to some degree, depending on various factors. But I feel like I have NOTHING to complain about at this point. I would love to quit the MTX, but I guess I am not a candidate for that for at least another year or two? I did unilaterally stop the leucovorin a couple months ago, because I ran into a glitch in getting it refilled. Bad idea - next labs showed a big spike in liver enzymes. So it turns out that drug is important for me. I'm just so glad every time I get to take a drug off the shelf, I guess I got a little over confident! My disease is/was "limited" to ears, nose and sinuses. I'd be interested in hearing from anyone who has achieved drug free remission and for how long.

[Pete]

Hi Tom,

I'm not in a drug free remission, but I'm probably as close as I'll ever get. I came off mtx on Wednesday and began a round of four weekly rtx infusions. I'm glad to be off mtx because of the hepatoxic effects, but also because the fatigue after taking it was more intense and lasting longer. My creatinine has been creeping up from the upper end of ok to borderline not ok. Hope the rtx takes care of that.

I got off pred during the summer of 2013, but started a flare with new kidney involvement after a couple of months. I went back up to 60 mg and, like you, slowly tapered down to 3 mg in April. However, I started having joint pain, so I unilaterally went back to 5 mg and things stabilized. I told my rheumy about the pred dosage and the increased side effects, and she ordered rtx.

I think I'll be on low dose pred for the foreseeable future - probably will settle at 3-5 mg. I'll also be looking at rtx at 12-18 month intervals.

I'm ok with all of this for now because I live a nearly "pre wegs" lifestyle. I'm fortunate.

Btw, I started out similarly to you with ear, sinus, and lung involvement. The ear damage was the only issue that's been permanent, but I hear ok with hearing aids.

Good luck on your journey!!

[Debbie C]

Its good to hear the both of you are doing so well.When I keep asking my dr. at CC about getting off the pred,she says the consequences are worse than being on it, so I too am probably a pred "lifer". Tom,there have been a few people on here that were drug free for some time but I think it came back to bite them in the a... I am sure they will tell you about it. Take care...both of you guys !

[Birdie]

I keep asking my dr. at CC about getting off the pred,she says the consequences are worse than being on it, so I too am probably a pred "lifer".

Say it aint so. I have hope since finding this group. I'm starting to think 5mg could be a high dose when I hear of others on 1 or 2mg.

[me2]

I had a drug free remission that lasted 20 years. I'm glad you are headed in a good direction.

[mishb]

I have been on pred for the past 5 years and since 2012 have been swinging between 3mg and 5mg.
My Rheumy always said that it is safer to be on it and that it is probably better, for me, if I don't come off it.
At my appointment in July, my Rheumy told me that he is happy for me to reduce to 2mg and see how I go, but that I can safely go back up to 3, 4, or 5 if required, and that I should just take it day by day.
For the past 4 weeks I have been on 2.5mg, without an issue (previously I couldn't get lower than 3) and today I took my first 2mg.
I don't have to see my Rheumy again until January, so I'm not sure if he wants me to try and go lower if I don't have any issues at 2mg, or just stay at 2 until I see him again. It's not a big problem, because I really do feel more comfortable on some sort of pred, and feel a bit weary about coming off it altogether.

Good luck Tom. Big party time in 30 days I reckon

[renidrag]

I have been in drug free remission since 2010 with a little bump of a couple of months when I went back on Pred, like Michelle, Doc gave me the option of taking it or not. I did for a month or so and found little difference so tapered off and I remain there.
Dale

[Birdie]

For anyone who has, what happens when you stop taking prednisone?

[Pete]

For anyone who has, what happens when you stop taking prednisone?

If you've done a slow enough taper, nothing happens. Your energy level, appetite, moods, etc. will be the same. You just need to pay closer attention to your body. For me, random aching joints are reminders that the wegs dog is stirring. For others, an increase in fatigue is a warning.

[drz]

Stopping all maintenance meds increases risk of relapse since most who do so relapse withing a year or two. Some people notice an increase in their residual symptoms as they taper down or try to stop so they never get drug free. If your symptoms and damage are not severe, it is worth trying to get and go drug free since a sizable number (estimated 20-30%) can successfully do so. Some times people taper very slowly with no problems, other doctors seem to prefer a more rapid pace if you can handle the increased discomfort caused by residual symptoms that usually appear from the withdrawal but sometimes go away as your body slowly adjusts to being drug free. An abrupt withdrawal from pred meds can be very dangerous if you have been on a high dosage for long time so a taper of some kind is always required for safety.

There is research going on about best ways to taper off all meds and to try learn which drug treatments do best at maintaining a remission but the results are not in to reach any consensus.