I have been off pred. for four months now. I have been so much happier. Able to emotionally handle things better and the weight I have lost (15 #) has made me so happy and feel so much better not carrying it around. Have any of you refused pred.? I just don't want to go back to it. Ideas for alternatives? They want me on it because I have muscle inflammation.
I am on it again now. This time I am loosing weight though. I think it is because the disease is loosing the weight for me. But I am not even going there and trying to understand:) Last time I gained 20 lbs this time I lost that and 5 more. Who knows?
I know how much you don't want to go back on it. But for the next two months, at least, you are making extreme changes in your life. On top of that you are very sick.
Can you give yourself a time limit on the prednisone with a plan in place for getting off of it again. You are waiting for other meds to come full force. You need to get into a routine where you can have your time for exercise and rest.
Prednisone is awful. But running your body down, or being so incapacitated that you can't function isn't good for your body or spirit.
Whatever you decide about going on prednisone, make a plan for coping with the results. If you go on it, then have a schedule in mind for working back off that you and your doctor thinks is reasonable. If you stay off of it, then you are going to have set boundaries on your activities. Your family is going to have to give you extra rest time. Brett and the kids are going to have to be the ones to do most of the moving. You are going have to cut activities shorter than you want to.
It is still a choice. I know you worked really hard to get off of it. But it seems to be one of the major treatments for the polymyositis. I've been reading up on it since you said that you have the diagnosis. I'm worried about you. If they can get the inflammation under control early, then your overall, long term health is suppposed to be better.
It's is a lot to consider, but in the end, what is going to make your health better? Your family, who are so very important to you, are not going to have you at all unless you strategize how you are going to take care of yourself.
Take care of yourself first. Then, all your love for others and life can come pouring out of you.
Just wondering if I should drag out my acceptance speech again????I know you guys. I used to think there was no alternative to pred. but it is like an addiction. It amazed me how hard it was to get my body off of it.
Today I feel a bit better and I did 30 minute water exercise. I am going to first give this infection/flare some time to go away on its own. If not, then I will do the pred. pack. I just thought maybe if they gave me more nsaids, maybe that would do the trick for inflammation.
I always feel like the doctors want the quick fix without looking at the long term consequences. It is so important to me to have quality life as long as possible. We are starting on a new adventure and I think with it, my life will be more filled with love and peace. I so look forward to starting new.
I do love my doctors, they will be hard to replace but pred. sh*t, I still have not taken off all the weight from last time and Brett and I are just getting into sinc again. I hate those pms feeling mood swings.
We will see. It is so hard to accept this illness and now another diagnosis. If anyone does run across an alternative therapy than pred. - I would like to try it.
Thanks for your input. Jeanne, Deanna, Jane- I know your advice comes from your heart but I need time. I did feel some better today. Maybe I will get better again tomorrow. I was doing great with all that water exercise and good diet. I am sure this vaginal infection is not helping anything. They took me off of Enbrel so that will finally heal - maybe then...................
Hey wait a minute Roxy- I am with you on this one...I dont ever want to take prednisone again...I dont like it, and I would rather deal with a little bit of pain than prednisone and its side effects. I can have sore feet and a smile on my face and that is way better than sore but less swollen feet and a guppy-head.
The dose pak works wonders when my shoulders are locked up and I feel awful. The RA symptoms do return but to a much lesser degree! We saw on the website they put on there OUR HOUSE closes Aug. 15. That must mean they do not foresee any problems I think. I cannot wait until it really is OUR HOUSE.
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