New taper--too fast?

Hi, I feel like I keep asking the same questions over and over--I hope not! I wonder if anyone can give me some insight on tapering.

 I was on 6mg/day of pred for a long time, maybe 6 months or more. I dropped to 5.5 mg 2-1/2 weeks ago. That went fine. I decided to try doing what the rheumy told me--taper by .5 mg every two weeks, if possible. So I dropped down to 5 mg daily  5 days ago.

Yesterday(the 4th day of the new taper) I felt really tired and I hadn't done anything abnormal. Well--I did go to watercolor class and the only strenuous thing about that was carrying a tote bag of supplies, etc. I felt okay at the time but did have lower back pain later on (that isn't PMR, it's osteoarthritis).  I did my regular exercise in the morning which is riding a stationary bike. My knees are doing really well, still not 100%, but recovering really well.  I still can't put any tension on the bike for very long, but anyway I can freewheel it.

I went to bed early because of feeling tired, and slept pretty well--I was possibly a little stiffer than normal in the morning. I notice I'm getting more PMR shoulder pain than I ever had before, but that's been going on for awhile.

Anyone who's tapered to this level, do you remember if you felt sort of "funny" at first.  Maybe feeling funny is part of getting used to less prednisone.  I'm a little worried that I might be backsliding into a flare since my symptoms are getting slightly worse.  I don't know why I am trying to taper the way the rheumy said to--I feel like the Ragnar, Celtic, mrs UK and others' methods are better.

I'm wondering if I should just keep going and see what happens or go back up to 5.5 mg before I get into a flare? Geesh! How does anyone ever know what to do???

Next Monday I'm having blood tests ordered by my primary care doctor. One of the tests is CRP, so maybe that will help determine where I stand. Thank heavens for her, following up the way she does, every month.

freesia






Edited by freesia - 07 September 2011 at 1:58pm

Thanks, mrs UK ! I'll give it a few more days.  I'll just play it by ear and try not to get stressed out by the rheumy's ideas.

freesia



Edited by freesia - 07 September 2011 at 4:31pm

Nanatjjj, Thanks for your support.  Decreasing the pred is very tricky because it feels like  a little cushion of relief has been removed.  It's like there's a little extra stiffness but maybe it will go away so you just have to hang in there unless you start feeling horrendous. You're so right that even good rheumies can't predict how our bodies will react or if we will take a nosedive.  My CRP levels have pretty much coincided with how I feel, so for me I think they are sort of accurate. I don't totally rely on them, though. I'm glad you got off the Tramadol!

Pearl, thanks for your support! I can only imagine what it must feel like to be all the way down to half a mg! It seems like it would be easy to get to zero from there, but I guess not. Nothing is easy with PMR and prednisone.  My old acupuncturist told me that when she was tapering steroids (for allergies...before she was an acupuncturist) when she got down to 1/2 mg and lower, she had to cut the tablets so fine they were in grains and just take little bits. What a powerful medication it is!

Hope you all have a good day.  Hope you have a nice trip, Nanatjjj!

freesia

luckycanuk, thanks for telling about your experience with tapering. That's very helpful !  Do I understand correctly: suppose you get to 5 mg and feel a little rocky, you wouldn't increase back up to 5.5 or 6 mg, you would just stay at 5 for a little longer? 

You know, my rheumy doesn't test the SED rate anymore--only the CRP. I don't know why. I wish she would test both.  The blood tests usually are a good indicator for me --how I'm feeling pretty much coincides with the results.

Cheers,
freesia

So rather than try to use the Ragnar method, for example, you stick with the same dosage for a longer period of time? Maybe there is something to this. I was on 6 mg for so long, I was really ready for my transition to 5.5 mg and it seemed easy.  One thing good about it: there's less to stress over and remember as far as "now what dose do I take today?" Of course, writing it down and consulting the calendar is really no huge problem but it does add a little complication.  Whatever works, I guess!

I wish I'd kept more careful track of my blood levels.  For some reason my rheumy stopped tracking my SED rate and I can't remember why! All she usually gets is my CRP.

I am starting to feel anxious to be "off" prednisone but at the same time I realize I can't rush it! I do feel pretty stiff in the mornings and it makes me wonder if I should be on a higher dose, but I don't feel like I'm going into a flare so I just continue on as is.  I hope at some point I will feel like I used to--normal!

I can sort of understand your fears about being off prednisone. For me it's been like a crutch, or a helper, even though I was scared to take it and hated the side effects. So I might miss it.  I think I may also feel afraid that once I'm off it, maybe GCA will suddenly strike.

Thanks for your help and hugs!
freesia