Adrenal Insufficiency and going off of Steroids.

LucyLouWho

LucyLouWho

Senior Member (Voting Rights)
I am going off of steroids due to my severe intolerance of being able to take them. Prednisone was like valium to me. I slept constantly and Medrol has made me crazy. I have been agitated, anxious, talking to myself and unable to sleep. At times I feel manic on it at only 2 mg.

Does anyone know what I should expect by going off of them? I had an epidural followed by being put on them in February until now. That is a long time. I was able to do more in some ways, but the price was too steep for me.

I will see an endocrinologist tomorrow.
 
LucyLouWho said:
I am going off of steroids due to my severe intolerance of being able to take them. Prednisone was like valium to me. I slept constantly and Medrol has made me crazy. I have been agitated, anxious, talking to myself and unable to sleep. At times I feel manic on it at only 2 mg.

Does anyone know what I should expect by going off of them? I had an epidural followed by being put on them in February until now. That is a long time. I was able to do more in some ways, but the price was too steep for me.

I will see an endocrinologist tomorrow.
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My daughter was put on a small dosage of hydrocortisone which she could not tolerate ( seemingly cortisol can be an issue for pwme but endocrinologist not aware)
Coming off now- headaches, nausea, slight loss of appetite, scaly itchy skin . Joints sore ( note skin, joint and muscle stiffness were major side effects of being on hydrocortisone so perhaps just working down ) Mood seems ok and sleep has improved mostly
 
Amw66 said:
My daughter was put on a small dosage of hydrocortisone which she could not tolerate ( seemingly cortisol can be an issue for pwme but endocrinologist not aware)
Coming off now- headaches, nausea, slight loss of appetite, scaly itchy skin . Joints sore ( note skin, joint and muscle stiffness were major side effects of being on hydrocortisone so perhaps just working down ) Mood seems ok and sleep has improved mostly
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Steroids are just hell. I was on cortef and so messed up on that, too. Years ago. If I do have Addison's, I am screwed.

I hope she continues to sleep, etc.
 
I'm really late to the party here, but I've been on prednisolone since 2005. It was given to me when I went down with polymyalgic rheumatica. Pretty rapidly the dose dropped to 10mg, but I've stayed at that level more or less ever since. I have eased down many times, and have actually come off several times, but each time my quality of life drops. My energy levels drop and a one-sided head, ear and neck pain kicks in.

It's my personal opinion that something in the sinuses on that side of my face is liable to irritation/inflammation or whatever, and the steroid keeps it dampened down. But of course, the standard medical reaction is a shrug, and encouragement to reduce the dose.

I'm currently on another attempt to drop the dose.
 
@Graham -I am down to 1.25 mg of prednisone and my pain is back in full force with Sjogrens. I am dying. I have awful neuropathy. My feet are killing me.

I dropped down because I felt awful on it and I am not on antidepressants because of it, but I would stay on the dose you are on. Many are on that dose.
 
I feel so sorry for you and folk like you. My son has ME as well, and is a bit more limited than I am, so I really do appreciate my good fortune. But I did fall and break my hip a while back - osteoporosis is a potential side-effect of long-term steroid use. So I'm having to be careful (my previous GP wasn't).
I'll send you a very, very gentle e-hug.
 
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