Re: weening off predisone

[Guest guest]

Hi ,

I haven't introduced myself but have been reading the posts for a month or so

now.

I also would have flare ups even while on the prednisone. The response to

that was to increase the prednisone until the flare was under control. My goal

was to get off the prednisone even though I was one of those that loved it. I

felt wonderful, happy, lots of energy and slept pain free. Although I never got

the desire to get up during the night and clean my or anyone else's home. I had

heard that was a side effect. :-) I even lost weight. However, as we all know

the quiet side effects are devestating.

I started QiGong last October (pronounced ChiGong). It is breath and energy

work. It's offered through our Cancer Center in town. It's free and one

doesn't need to have cancer to attend. I have now joined a community group that

meets once a week. (also free) The amazing thing is I have been able to work

through two significant flareups without increasing the meds. It also helps with

daily pain so the Tylenol is rarely needed.

Now should some of you think how lucky I am to not have unbearable pain every

day I will tell you it was unbearable for a long time. I slept for about 1.5

years, had to quit my job and was very non functioning. I have put in a lot of

effort and research into what else helps.

My flareups have also affected my arms. Just one at a time. My arm is

completely useless during that time. I could not raise the affected arm enough

to apply deodorant or move the arm across my body to put deodorant under the

other arm. Washing my hair with both arms, not possible. I told my RA doc it's

funny that those aren't the questions asked to determine how you are doing.

They ask " can you button your blouse " but not can you pull up your pants, wash

your hair, apply deodorant.

I have a wonderful Dr so I'm not complaining about him. They follow the

protocols required in diagnosing and treating RA even tho some of us want things

to happen much faster. When I was diagnosed I said, alrighty then, just give me

the meds to get over this thing as I'm training for my 3rd half marathon and I

didn't want to ruin my schedule. (I was 56 at the time and was walking the half

marathons)

I also have flares in my jaw. It will push the jaw off center so I can't open

it, laugh or chew. Very painful.

I still have pain every day but by following the practices that even healthy

people use it has helped tremendously. I do meditation, gentle yoga and now the

QiGong. I walk everyday and am lucky enough to have a good friend who will drag

me out the door even when I just don't think I can do it. I always feel better

afterwards.

I will take arthritis strength Tylenol but won't take the narcotic or opiate

pain meds. It took 1.5 years to find the right combination of meds that work

for me. From what I understand from others in a RA support group I go to this

is the norm.

Also for any of you that may also be self afflicted with high blood pressure,

I am now off the high blood pressure meds and maintain a 110/70 blood pressure.

And that's without losing the weight that I also need to work on.

I was diagnosed June 2005 and I'm now 59.

Good luck to you. I am now on 4.5 mgs of prednisone a day and planning

another attempt to reduce it. Trying to reduce the other meds I'm on also and

that is a slow process.

But I am one mellow lady now with a dream of doing the half marathon I missed.

My Dr just smiles and doesn't think it's in my future. But being stubborn I am

determined to give it my best shot. I have a long way to go before it will

happen but it's good for my health to keep moving.

Pam

<jultep@...> wrote:

Had to call the Dr today for Pain Meds. since I am off the predisone

the pain has come back full force. I can' get my left arm to stop long enough to

even brush my own hair. This flare has lasted longer than any I have had in the

past 19 years.I have been on all the medicine out their so far and no luck they

work for a while and my body must become immune to them because they stop

working after a while. I too have the twisting fingers and toes as well the

popping joints but with my popping I have pain.. I hope for everyone here that

they have a pain free day I would love to have one for myself. take care all.

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