New to Forum | Arthritis Information

Hello all, I just located the message board have found it helpful to know others feel as I do. I was diagnosed in August and put on 60 mg prednisone, by my family Dr. I went to the rheumatologist and he began decreasing me. I came down to 15 mg by Sep. 1, however my fatigue is worse. My arms and legs feel like lead after I have done just a little.and I need to lie down often. I wonder if I need to go back to 20 mg for a while. I would rather not, but if it would help, I would. I guess I should call the Dr. as my appointment isn't for 2 more weeks. Would appreciate any comments.

Shirley Welcome Shirley, I haven't yet reduced from 20 mg, so i am not the best to
answer, but i would call the dr and have a conversation. How long have you
been down to 15? How fast did you come down fromthe 60? all thses things
seem to have an impact from what i have read by others. Watch the forum, I
am sure those who have more experience than me will answer soon.
Good luck,
pgrWelcome Shirley, you will find a lot of help and support here, this is a
wonderful group of people.

I started out at 20mg in March, reduced to 10 (doctor's advice) had to go
back up to 15. Reduced again to 12, had to go back up to 15. Have slowly
reduced down to 12. I think I will hold there for awhile. Most of us have
discovered that the key is to reduce sloooowly.

Take care, LibethPGR555, I was reduced from 20 mg to 15mg on Sept 1. I have only been on since August. The month of Aug. I went from 60 mg to 15 mg in Sept. However, I feel worse than I was when on 20 mg. My thinking is to tough it out, then I think why should I suffer. This is a strange disease, Thanks for all the comments.
Shirley

Welcome Shirley, I have discovered that there is a lot of variety among doctors on dosage and methods of tapering. But it seems generally agreed that slow is best, in small amounts. Just from what you have said, I think you have dropped fast in big jumps. We all seem to have a different "optimum dose". In my case, it's 10mg. For pgr it is 20mg. You need to reduce NO faster than 1mg every month. In fact even the 1mg drop can be too much, as I have found. I am doing 9 1/2mg for 2 weeks then down to 9 for a month, and so on. You can get the pred in varyious mg pills which enables you to go down in 1/2mgs. Maybe your optimum dose is 20mg, if so, you should be tapering down to say 19 1/2, then 19 and so on. We have all decided that the fatigue tends to hang on and is very hard to shake. I think we are all fatigued, even if the pain is under control. Stay with us, it's a very helpful forum. Welcome Shirley, I'm so glad that you found this site early on and so sorry
you need it. I'm fairly new here also and felt Isolated for almost a year. And
I so understand that you are feeling a bit like Alice in Wonderland where
everything is strange and crazy. I kept telling people at first that pmr is
weird and continually changing. You will sort it out as time goes by.

Please be careful how you handle the prednisone. We all want to be done
with it but it's a slow and up and down process.

Stay connected,
Geralyn

Hi Shirley:

Welcome to this wonderful group. As others have said I am sorry you have the need for it, but good it is here. I am fairly new (a couple of months) and I check in every night. I was dx July 24th and the dr put me on one week of 50 mg of Pred to verify that I did have PMR. The pain was gone in a couple of days. However, after that first week to dx the dr put me on 25mg for two weeks and than 20 mg for two weeks. I found that the pain came back (not as bad though) on 20mg, went back up to 30mg and reduced by 1-2mg a week back to 25mg. I guess my question to you is when you first went on 60mg, how long where you on that dosage? Was that just to verify you had PMR? But I do agree with the others, you did come down in dosage very fast. Maybe you should ask your dr about getting a script for 1-2mg and talk to dr about coming down slower.

Keep in touch often and let us know how you are doing, it sure helps to have these PMR friends.

The slugs now live in Wonderland! What an image! LOL
pgrThanks for all the input and encouragement. To answer your question, Missy, my family Dr. dx me and put me on the 60mg until I could see the rheumatologist, which was a week later. He began decreasing me, I did call him, today, he doesn't want to increase the dosage of pred. but said to stay on the 15 mg until my appt. in 2 weeks. He did order something for pain, which I may or may not take. I just need to remember I can't do what I used to, and learn to pace myself better. I am only on pred for 2 months. This forum has been a great help to me. Thanks again.
Shirley Shirley,
That has been the hard lesson for all of us... I haven't figured out how to
pace at all!
Just take care of yourself,
pgrHi Shirley,
Ah yes, the pacing! If there is a formula for pacing, I haven't figured it out.
Just when I think I have it, I am struck down with a very bad day and stagger
around shaking my head! "Help me to the nearest bed" I say. Is there a
lesson in all of this? Someone tell me what it is, please.

Take care, have hope,
Libeth
Pacing? What is that? PMR is so weird, I don't think one can ever figure out when is not enough and when is too much. Seems like no matter what I used to do, those bad days would hit wihtout warning, and with seemingly no reason. Got to learn to just hang in there.

Have a good week. Off for my walk.

Reni
Pacing... timely topic for me... fasted Saturday, Trip to Boston (family
command performance - 8 hour day- Sunday; Non-stop monday form 8 am
to midnight, then only 4 hours sleep; and Today? Had to work, thught it
could be a short day, but ended up still not getting home till 3 pm

So shoulders ache for 1st time in weeks, headache, exhausted... will I ever
learn? This isn't even my normal schedule - it is a cut back! I'm trying!!!
One of The slugs,
pgr

Welcome Shirley....

Wow! From 60mg to 15 mg in such a short time! That is scary!

You'll find some very good people here in the forum and they know what they're talking about.

Good luck to you and keep us informed on your progress.

Kathy