This is going on year five. I've been between 3.5 and 2.5 mg over the past year. The last time I flared I went back up to 3.5 mg. At that level i have felt completely normal. I completed the slow taper two weeks ago to 3mg. I am experiencing some fatigue now but no pain. I sometimes wonder if I'm symptom free. I guess I won't know until I keep tapering down. I'm not due for blood work for another 3 months.
How soon can I start a taper down to 2.5mg pred? Also, I will be going on a two week trip last week in August through first week in September. I will be hiking in national parks and doing a lot of touristy walking in addition to hiking . Should I hold off on tapering down another month until after trip?
On the side, I've been having a lot of stiff muscles in my neck and just completed 6 weeks of PT. My neck is slightly improved, but I explained to the therapist about having pmr in my shoulders that left my arms very weak which may have contributed to the neck issue. She included strengthening exercises and I've been gradually regaining my arm strength.
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Paperroses
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Hi, I usually work on a five week taper schedule, but looking at your upcoming holiday which is less than four weeks away, I would be tempted to stay where you are until you return home. This holiday is also sounding fairly energetic and as you are already suffering fatigue symptoms and are in adrenals, not up to speed, territory, I would suggest you need to make sure you have appropriate rest days planned.
Agree with Bcol on both points, a month or so in normal times… and not to taper before holiday. That’s never a sensible thing to do, and as yours sounds quite energetic, definitely not. Also sounds as if your adrenals may be struggling a bit [fatigue] so hold on current dose and give them a chance to catch up.
Plus as also said… you are out of your normal routine, so you need to make sure you allow for rest and recovery.
Since that holiday is not far away I would wait until you are home and fully recovered from it. The fatigue is due to the lower dose and your body not quite keeping up with the speed of taper. At this level I think you need at least a month at the new dose before setting off on the next taper and that will take you up to the holiday. Never taper away from home or during any other stressful period - whether it is pleasurable stress or the less pleasant variety! And take plenty of extra pred with you - just in case!!!
You have already received sound advice Paperroses. I can't improve on that. What I comment now is mainly commiseration from another sufferer. Like you I am at year 5. I understand your journey. I have been stalled @4mg for the past 24 months by an adrenal system that hasn't quite clued in to its responsibility. Several times during those months I have very gradually tapered @1/2mg steps to 3 and 2 and always unsuccessfully as pain has flared in my saddle area and knees. I have then with Rheumatologist's consent jumped back to where my body says 'thank you,' @4mg. I so much want to be off this stuff. I am also on 20mg MTX per week. I am 81.873 years old.
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