It's been a wild ride coming off of prednisone. Now that I've weaned off of the medicine -- it's been two weeks -- the new effects include:
Tiredness: Walking for any length of time results in a general feeling of tiredness. My breathing is fine, it's my body that can suddenly seem tired and worn out, like an old sock.
Sleeping: Today for example, I got out of bed at 11 a.m., after nearly 11 hours of sleep. For the past week or so I've logged in about 9 hours of sleep nightly. Need I say more? If I was normal and well, I'd be up at 6:30 or 7 and ready to go...
Lethargy: And now, once I do get up, I ain't exactly a ball of fire...
I read the newspaper, I eat breakfast and before you know it, half the day's gone. What a difference from when I was on prednisone and I never stopped doing things, always had something "important" to do.
On prednisone, I had lists of things to do...and I did them. I was unstoppable. I wrote on this blog at two or three times a week. Now I can barely do it twice a month!
Muscle aches and pains: Knitting, one of my favorite activities, hurts my arms. Walking can cause pain in my legs. I've had sudden muscle spasms in the muscles behind my knee. My muscles seem to stiffen up in the evening, but is that the prednisone or my age? And finally, yoga, which gave me so much joy, has become really difficult. But, I will get back to it very soon!
Visit to the Pulmonologist
Finally, I was back at the pulmonologist yesterday, Dr. A. I'm still fine and all the problems I've outlined above he ascribed to this post-prednisone period. He estimates this will continue for several more weeks.
In the words of Dr. Seuss, "We shall see, we shall see."
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I've been on prednisone for 3 years after 6 weeks of hospitalization in intensive care and being told I was dying from BOOP. Came home from hospital on 60MG of prednisone and have weened down to 5mg for about 2 years. Three months ago started to wean myself off prednisone by 1/2 mg (until I feel better then down 1/2 more). after three months I'm only down 1mg from 5mg, I'm depressed, sluggish, very tired, aching (sometimes very specific shoulder, joint pain). I'm now being told I have torn rotator cuff, I'm wondering if it's prednisone withdrawal?
ReplyDeleteI'm just plain miserable. Do Prednisone withdrawal symptoms last this long? Dr.'s aren't wanting me to stop, afraid of lung inflammation but I'm afraid of prednisone long term effects. My Pulmonlogist does agreed that I could try to stop and see what happens. I'm wondering if the specific aches could be prednisone (causing the injuries) and how long to expect the effects. I should think it would taper off after 3 months?
Your experiences with the withdrawal would help me quite a bit to know what to expect. Doctor doesn't think its worth the stuff I'm going through when i may have to go back on anyway. I guess I'm looking for a time line. Is this my body after BOOP? or will it ebb and how long will it take?
DEBERNEY@ATT.NET
I've had BOOP since 2007. Was diagnosed in 2009 and have been on prednisone since then. When the doctor gets me down to 10mg I get sick and he has to bump me back up to 40 or 60 mg. I guess I can't get off of prednisone?
ReplyDeleteI'm looking for a second option. BOOP Christmas of 2011. I two was sent home on 60mg. Down to 15 after bumps up when down made me sick. Tired, week, still at the same weight but all puffed up. Look for a good BOOP Dr in Boston!
ReplyDeleteI suggest you contact Dr. Epler. He is the doctor who identified and named this disease. You can even call him up. I see he has a new website and seems to be selling something. But, he's the one who really knows everything about this disease.
DeleteI wish you all the luck. I was fortunate.
http://www.eplerhealth.com/