I know the answer is somewhere on this board, in fact, it's somewhere in my head, I'm sure, as we have been over all this before, but somehow I am too tired to search and read. So can anyone tell me, when we are tapering, and get a return of symptoms, what do we do? I did 2 wks on 9 1/2, down from 10, and was fine. But now, since reducing to 9mg on Saturday, I have some return of symptoms, such as mild upper arm aches and odd aches and pains in other places. Now this is not really a problem for me, as they are mild and easily manageable, BUT, do I carry on on the lower dose or go back up the 1/2mg?
The reason I have doubts about what to do, is that I keep thinking that if I have ANY pain or return of symptoms, surely that means a return of inflammation? Because prednisone is not a painkiller, but stops inflammation, then surely no symptoms means no inflammation, and the presence of symptoms means the presence of inflammation? With a painkiller, pain is masked and the underlying condition is still there, whereas with pred, I believe the lack of pain indicates the underlying condition is being controlled. Is this theory correct????
So although I'd rather stay on a lower dose and live with the mild symptoms, I worry that the inflammatory process is creeping up again and if I don't go back to my optimum dose (10 or 91/2), I am putting myself more at risk of a flare of PMR or even of getting GCA.
Last time this happened, with a 1mg reduction, I persevered for 11 days with the return of mild symptoms, but they really started to bug me and I went back up to 10. This time I found going down by 1/2mg helpful, but maybe should have stayed at 91/2 for a month instead of 2 weeks?
What do you guys do? Do you expect to be symptom-free? Is it OK to still have SOME symptoms? What does it mean to still have some symptoms? Does it mean the inflammation is still active?
I just wanna get down to 7mg, waaaaaa waaaaa waaaaaa!!!!!
Chico, when I was having some trouble, after decreasing from 20mg to 15, my rheumy said to stay on the 15. I wanted to go back to 20, but I am feeling better. I will probably decrease after I see him next week. I don't know about the others, but I don't decrease or increase without consulting my Dr. From all that I read, here, the symptoms seem to come and go. If I pace myself , I do better. Also, I seem to do better on the anti-inflammation diet. Good Luck.
Shirley
Hi Chico
I agree with our theory in your second paagraph. The difficulty is that the
withdrwal of pred can cause muscle ache of its own accord, and the
problem is to work out whether the aches are pmror pred withdrawal
symtoms. I've tended to give it 2 weeks to get over the withdrawal,
bbefore I start blaming the pmr.
I am also taking it slower than you I think. If I remeber correctly it was
round about 10mg when I started going in 0.5 drops, and also 3 weeks or
a month between dropping doses.
My dr leaves me in control of dropping, and describes it as a bit like
adding salt to cooking. But he does caution me against going too far in
case the inflammation comes back.
MargaretIt is amazing to me how timely theses threads tend to be. Not to be
repeptative, but have been on 20 mg for what will be 3 months next week. I
was suppose to go to 17.5 alternating with 20 on Monday after I return for
my trip. Now this week i have shoulder aches and tired arms for 1st rtime
since I started pred, so am talking to the dr today & nervous abut the drop!
But she said I will do each dose for 1 month as I reduce & go 17.5/20 to
17.5 to 15/17.25 etc. always a month at a time... in other words very slowly.
What do yo all think about this return of achiness when I have been resting,
eating well etc?
pgr
I'm interested in the question of whether one should be on a dosage of pred high enough to eliminate any discomfort at all, or to be on a dosage that allows one to function pretty well but with some discomfort such as stiffness after sitting for a while, and minor joint pain or ache when doing chores or walking.
I'm in the latter category and figure some discomfort is to be expected as dosage decreases. But I'd hate to think I might be doing damage from the minor inflamation that is causing the discomfort.
Have any of the rheumys discussed this issue with any of you? My visits to my rheumy consist mainly of him asking me how I feel (I reply I'm doing O.K, the typical male answer, my wife says) and checking that I don't have headaches, eye problems, or jaw aches (looking for GCA). I should be asking him the above question, but I sense that he wouldn't really have an answer, since he's never had PMR and there seems to be a real shortage of detailed info about it, even on Google.
Hi Chico...I think the increase in pmr symtoms is more than likely withdrawal from the prednisone and agree w/Margaret that it is best to go slowly and only decrease every 4 weeks or so. I have also noted that it takes about two weeks for these symptoms to mellow out during the tapering process. If your sed rate falls into the normal bracket, then one would think that there shd be no fears about the effects of inflammation or GCA but there are always exceptions to the rule...best to ask the dr about it. I finally dropped down to 1mg two weeks ago and am just now feeling half way normal...whatever that is...it is a hard journey, that's for sure, and it doesn't seem to get any easier!Hi, All!Whew, Chico, I am exhausted worrying about your worrying
Thank you, Margaret....it is good to be getting that prednisone down but, boy, what a struggle. I hope your tapering continues to go well...I know it is hard. My rheumy wants me to stay on 1 mg another 4 months but if the sed rate is ok I really want to get off of it in two weeks...primarily because of the glaucoma that developed as a result of the prednisone and the fact that my cataracts are getting pretty bad. If I can maintain on just ibuprofen, I am more than willing to put up with some pain. At this stage of my life there is always some pain somewhere anyway...and now that Chico is worrying about us all I guess I can just relax!
Chico,
Loved your worry story. Sounds like NY except we have not found any volcanoes to worry about, yet. Just security sleeping on the job watching our nuclear power plants. Folks shooting and killing each other for various assorted reasons. Animal cruelty issues always coming through via E-mail or blinking answer machine.
The continuing saga of Medrol, and which part of my body has not been heard from yet. I mentioned CP once, in converstation to my doctor, and ended up on a treadmill, I could barely climb on to, with radioactive dye hanging from my IV line.
Sadly, this disease takes up most of our waking and sleeping hours. When I see folks laughing and jogging or just strolling, I get envious to be like that again. (well maybe not the jogging part)
Then back to what time the meds are do, and which dog or cat needs their medication. I have mostly special needs pets. Which eye drops are do for the blind one or how bad is the other one's tremors.
Actually, I just keep wasting time hoping that one morning, I'll throw my right leg out of bed, and the rest will follow with ease. Sad, I once wished for money and a large farm.
Donna, NY