Should I obey the doc or do the slow method like I want?
Posted , 11 users are following.
Dear People,
I goofed and my story is listed as a reply to the discussion, when I should have indicated "start a new discussion." Sorry about that.
I'm hoping to hear from anybody who will read what I wrote as a reply to the current discussion, and give me some feedback--
Also, advise me: am I obligated to get back to this rheumy and tell him what I'm doing, that is, the slow reduction that he is not in favor of (although he gave no reason). As a patient, I don't want to be too obstreperous, but still, it's MY BODY and I'd best remember that.
All your ideas will be very gratefully received--Barbara
0 likes, 15 replies
FlipDover_Aust barbara75814
Posted
My personal opinion on pred reduction is only YOU know how you are feeling and coping. Drs are not gods. Sometimes they have no clue what they are talking about.
ptolemy barbara75814
Posted
I have very swollen ankles and feet. I have leg and foot massage which is lovely though.
Sjohn barbara75814
Posted
ray12929 barbara75814
Posted
the reduction can only be up to you as you are the one with the pain.
Anhaga barbara75814
Posted
BTW here is the text of your reply in the earlier post, hope this helps:
Hi,
I have had badly swollen feet and legs almost from the beginning of PMR in my case.
A couple of days ago when I saw the rheumatologist for a 3-mo. visit I asked him about this. He said the swelling had nothing to do with having PMR, but I find that hard to believe. At my age, 84, some swelling is certainly not unusual, but what I have is so bad I can't wear normal shoes.
I am at 4 mg. The doctor volunteered that I am at a dangerous level--that ata 4 and below, the body tends to rebel greatly about any more reductions and, he said with a smile, "you might have to go back to 10 mg. or something..."
I asked what he thought about the very slow reduction method and he said "I wouldn't do that--just keep doing your 1 mg. per month like you have been." No further explanation.
lodgerUK_NE Anhaga
Posted
Your adrenals glands have been asleep since you were on pred for longer than two or three weeks. During the time you were on pred, you were getting older. It could be, and I am not saying it will, that your adrenals glands will not wake up and 4mg is not enough if they do not wake up. More like 5mg per day. You need a Consultant Endochronoloist for this test and it is simple and painless, just remember to take a book with you as it can take up to 4 hours.
I had a test after being on pred for 5 yeasr and I was still on 3mg of pred, I found out later that I could have had this test at 7.5mg and below. My adrenals were fine and I could stop the pred.
I also think anyone on longterm pred should have this test at 7.5mg and below.
Anhaga lodgerUK_NE
Posted
lodgerUK_NE Anhaga
Posted
gail2910-US-MI barbara75814
Posted
barbara75814 gail2910-US-MI
Posted
or "act up" at the very low level of pred it is getting, and (I guess)
cause a lot of pain as you try to reduce further.
ray12929 barbara75814
Posted
pauline36422 barbara75814
Posted
david14272 barbara75814
Posted
lodgerUK_NE barbara75814
Posted
This test will tell you if your Adrenal glands have woken up and are working correctly.
barbara75814
Posted
You are all so helpful!
I decided to go ahead with the SLOW reduction and have written the rheumy what I think is almost the world's almost most polite,
appreciative note to let him know. If there should be fireworks, I'll just have to find another doc.
Thanks again, everybody--
Barbara 75814