Hi all. I have not written for a while, but read each comment every day. I was diagnosed with GCA in mid August, started on 60 mg PRED per day, and am now at 17.5 mg -- following the tapering schedule of my rheumy. I started keeping a diary in mid October to record how I felt each day -- and also graded each day from 0 to 10, 10 being GREAT. I just finished reviewing the diary, because I've been feeling quite rotten, and it seems that no matter what the PRED dosage I cannot consistently feel very well. Recently, I've been hovering around a 5. The highest I've gotten are random and rare 8's. The lowest is a 3. My main problem is awful fatigue, but also GI issues -- either constipation, or diarrhea, or pain in my back and even chest (I even went to the ER once to rule out potential cardiac issues -- which have been ruled out).
Yesterday, I went for another blood test and for the first time since August my CPR and ESR's were both elevated. My rheumy suggested that I go back up to 20 mg per day and to call him if I am still feeling rotten. But I've been feeling rotten since this whole thing started!!
Now I know that we're supposed to watch out for headaches, jaw pain, etc. so I'm not talking about those things. What I am wondering is this: Are GSA sufferers supposed to feel more-or-less okay when they've found the right PRED dosage -- OR are we supposed to feel quite crappy until this stinking disease burns itself out?
I am new to this site
Here I am again looking for reassurance 
am i suffering from change in antidepressant or is it withdrawals from reducing Pred
Am I having a relapse?
Am I ''better''?
What other medications do you take besides pred? How did you feel in August on 60mg and how long did you stay at 60mg before starting your reduction? These are important bits of information for us to comment.
Not that a lot of rheumies these days seem to understand, but the idea really is to stay at the starting doses until your symptoms are really well under control and the blood markers are considerably reduced and, preferably, heading for the normal range. If you are allowed to do that, the way you feel at that starting dose forms an important reference for the tapering process. You are looking for the lowest effective dose - the lowest dose that works as well as that starting dose did. You should never feel worse at the end of a taper step than you did when you embarked on it. You too have to do your part - being on pred is never a passport to return to your previous normal life and level of activity. Pred CURES nothing - it is a management strategy and part of the management strategy is in your hands with pacing, resting and adapting your lifestyle appropriately.
My suspicion is you have been reducing far too fast - most people would take 6 months to get from 60 to 20. Not 3 months. And there are probably other factors.
Thank you for the fast reply. I am taking no other medications aside from PRED. I started on 60 mg for 2 weeks, then 50 for 2 weeks, then 40, then 30, then 25, then 20. My inflammatory markers went to near zero immediately after the 60 MGs. I felt like superman, and admittedly overdid it. But then it hit me -- the fatigue. Bad and strong. There's no way I'm overdoing it now because I can hardly do anything. I wasn't keeping the diary when the fatigue hit, but I'm thinking it was somewhere around the 25 MG dosage.
I do read all your messages and I do understand the need to not overdo it. But again, there's no way I'm overdoing it.
Thanks
With that speed of reduction - your body has never had a chance to adjust to the current dose - and that also plays a part, The underlying autoimmune disorder is still active, it tends to make you feel as if you have flu. And pred does nothing for that.
Well, even according to you, I have been following the standard taper routine -- so now I'm confused (which is not unusual).
I don't think I would EVER say that was a standard taper routine. Two weeks on a dose at that level is never enough.
This is more like what I'd support:
rcpe.ac.uk/journal/issue/jo...
Well nuts. But thank you for this, although I don't know where to go from here -- and I'm sure you know what will happen if I confront the rheumy with this information. So bottom line, as per my question, is that I should NOT feel this crappy if I'm at the right PRED level, right?
“So bottom line, as per my question, is that I should NOT feel this crappy if I'm at the right PRED level, right?”
Correctamundo!
I never felt that crappy at any dose….. but didn’t taper as quickly as you.
My GP and ophthalmologist were ultra cautious ( for obvious reasons ) and GP & I decided together when I reduced, based on how I felt and results of blood tests.
Took me 24 weeks to get from 80 to 20mg - with 8 weeks at 60mg along the way - that was the real game changer.
Correctamundo! Ha! I love it. Thank you
Right!