reduce pred;now pain????? | Arthritis Information

Hi All,

I started on 15 mg of pred for 6 weeks, then reduced to 12.5. Two weeks into my taper, I had blood work done, the CRP and sed rate are within normal limits...I am glad for that... The BIG question is:

Why is the pain back?

At this point, I am scheduled to be on 12.5 mg for another 4 weeks, which is a total of 6 weeks, then taper to 10 mg a day for 2 months, so by Dec, I will be seeing the doc again.

The pain is not as severe as it was prior to the pred, just curious if anyone else has experienced pain when reducing dosage...I don't want to go back to 15.

Thank you,

Janet

Hi, Janet.

Sorry to hear the pain is coming back. As I said
before, reduction in prednison dose doesn't always
equal reduction in pain, and you may need to bump up
the dose again for a while. OR.... it could be
prednisone withdrawal symptoms??? I don't know for
sure. When I got below 8 mg the pain started coming
back,and even worse when I finally quit prednisone, but
it was not apparent at first if it was the PMR
relapsing or symptoms from going off prednisone. They
can be pretty much the same. Ask your doctor next time
you see him (her). Of course, they can't always tell
either. It's 6 of one, 1/2 dozen of the other.

I am having hot flashes like crazy lately, and I can't
blame it on the prednisone now.('') Still have
muscle and joint aches that keep me awake at night or
wake me up when I DO get to sleep, but they don't feel
the same as before, so not sure if it is something else
or different aspects of the PMR. Will see how the sed
rate is again next month, and then see the dr. in Nov.
with LOTS more questions. Heehee! On the whole, though,
I am doing pretty well and manage to do most of what I
need (and sometimes WANT) to do. Wonder if I'll ever be
pain free, but at least my mental attitude about it all
is way better than it used to be. Rather than fighting
it in my mind, I've accepted that this is the way it
is, and that makes a big difference. After all, it
could be so much worse.

Hang in there, and I hope things get better for you.

Reni

Thanks Reni,

I am going to believe it is ok....this is such a bizarre condition with lots of unknowns. The pain is not as bad "pre pred" but not gone like on 15 mg. I am going to stay at 12.5 and endure the discomfort and inconvenience...I am going to work around it.

I do miss all the exercise that I used to do, but for now, I walk my sweet yellow lab and do everything else....just with more stiffness. I took 400 mg of Advil mid morning...that helps my shoulder area alot. I don't have the nighttime pain as you mentioned, but, boy do I remember how painful that was before I was being treated for PMR.

I never had hot flashes and I am at the age--52. But I did start the horendous (sp) sweating with doing very little to promote it. It seems to have subsided. There again, who knows why!?!?!?

I have a question on weight...I haven't gained weight, but my pants are tighter around the middle and my face has some pudge.. Is that water retention?..My puffy, dark circles under my eyes bother me the most.....any of it familiar to you? I am aware that pred causes an increased appetite, therefore, I am very cautious as to my diet.

Do I remember correctly that you are not on pred now? And if you were on it, for how long?

Good "talking" with you.

Janet

Hi, Janet!

Yes, you remembered correctly that I am not on
prednisone any more. I took it for a year, then went to
plaquenil for about 6 months. Plaquenil didn't help
much as far as I am concerned. Never had the dark
circles around my eyes, but do have the weight around
the middle still, even after losing almost 20 pounds.
The face puffiness is mostly gone - yay - and I am
finally able to tell that my "fat" pants are looser
now. Still can't fit into my old pants, but am working
slowly on that. Prednisone tends to make the fat gain
around the middle (not good), and I hear it's pretty
hard to take off. A lot of the pudginess is water
retention, and once you're off prednisone, should be
able to lose a few pounds fairly quickly. I hear that
some people are actually able to lose weight while on
prednisone?? My husband used to take megadoses of
prednisone when he was younger (for asthma), and he had
the typical "moon face", weight gain (especially around
the middle) and even got some pretty horrendous stretch
marks. He lost around 30 pounds a couple years ago, and
the "belly fat" went, so there is hope.

As far as my hot flashes, along with a lot of sweating,
too, I've been having them for almost 7 years now (I
will be 57 in 3 months). Just don't understand why they
are so much worse here lately. Am hoping this too shall
pass.

After I sent that last post, I thought that maybe you
are tapering too much at a time, and perhaps that is
why you are hurting more. I wonder if going down by 1
mg at a time rather than 2.5 would make things better.
But, good for you for being willing to tough it out on
the current dose. One of the things I keep telling
myself is that this disease is not supposed to be
causing any damage like rheumatoid arthritis does, so
if I hurt more than I'd like- doing what I want to do,
then at least it's not because my joints are falling
apart. And so I sometimes push a little harder than I
might otherwise. It's a strange thing, this PMR.

Good "talking" with you, too. Keep us posted.

Reni

You are a gem, Reni.

Thanks for the informative and encouraging reply.

I have a feeling that when I start to to taper down to 10 mg per day for 60 days, the taper after that will be at lower incriments. I am holding hope that the pudginess will go away, and I believe that some contributing factors are that I a cannot exercise as intensely as I was able to prior to PMR.

I agree with you, in that, this "stupid" condition does not cause damage. When it's gone, we will be "us" again.

My mother's neighbor has a friend whose PMR lasted the typical 3 yearish time, and during the active part of the "condition" she stayed active......I am doing that...I will be 53 in December and led a very acitve, athletic life. Maybe we are supposed to slow down a little....My mind says I am 30, but my body is not that anymore.

On a fun note, my hubby and I are going on our first cruise. I am looking forward to it.....I will get exercise if I like it or not, for the simple reason I do not do elevators, so will be using the stairs all of the time. People say the food on cruises is out of this world, but I am the type, if I am busy, food isn't my entertainment.

I am hoping that your hot flashes pass also. I would tell girls at work that maybe all of this sweating is melting calories...ha ha

I will be back next Sunday and look forward to hearing from you.

Again, thank you for your upbeat and encouraging words!

Stay well and keep in touch,

Janet