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Does anyone here have to take steroids every day for the rest of their life?

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Posted 8/29/2008 5:51 AM (GMT 0)
The infectious disease doc told me I based on the info she got from Mayo that I will need to take steroids for the rest of my life. I'm assuming it is from pituitary and/or adrenals. I already take synthroid, but I'm not sure that counts. I don't understand why else they would give me steroids every day. I was kind of surprised and didn't think to ask why. She just said because of my test results and my medical history and workup. She said autoimmune disease and other problems.

I'm afraid that my pituitary is not working so then my adrenals are starved and will shrivel. That's what the tests show. My adrenals do respond if I get ACTH, I just don't make it and a bunch of other hormones that are pituitary hormones.

In the appt. I thought they were going to blame my pituitary and adrenals on my rheumies past treatments with steroids. They seemed to keep questioning why I was given them. But later, at my last phone appt. They emphasized that I would definitely need steroids and so they were treating my TB.

Could they be talking about some kind of every day steroid treatment for autoimmune disease? I didn't think docs do that. I thought it was just tapers. It sounded like supplementation to me. Any ideas? I plan to ask, just between weather, money, and my health haven't felt up to scheduling a sooner appt than my next one a few months away.

Posted 8/29/2008 2:24 PM (GMT 0)
Many of us have total adrenal failure, and need to take replacement steroids. The adrenals produce about 7 mg normally, so most people can level out at somewhere around or less than 7 mg of prednisone (or other corticosteroid).
Posted 8/29/2008 2:35 PM (GMT 0)
I have been on steroids for 5 years now. with an occasional break. But for the past couple of years I have never had any time that I wasn't on at least 10mg. I've never been told I could ever attempt to get off of them. So I figure it's a life thing. Just like my antibiotics are for the rest of my life. Stinks don't it?
love ya
carol
Posted 8/29/2008 2:58 PM (GMT 0)
Hey Marji,

 

I've been on prednisone for over 8 years now.  No break from it.  I have mild adrenal fatigue as well so I will very likely need to be on pred for life.  It sucks, but what can I do.  My maintenance dose is usually 5-7.5mg.  Not too bad. 

 

Ginny

 

 

Posted 8/29/2008 7:37 PM (GMT 0)
Hi Marji:

I just wanted to say I've been on Pred for 7 years and I've never been off of it. I know my adrenal glands aren't working like they should, since I've used pred for so long. My Rheumy mentioned the last time I saw him that it was looking like I'll be on pred for the remainder of my life.

I know it's depressing to hear that from your doctors. I'm sorry that you had to hear that you've got to be on them the remainder of your life. I wish I could do something to make it easier to accept. I hope that you're feeling a lot better and are able to get around a lot easier. You take care and keep us posted on how things are going.

Take care,
Barb
Posted 8/29/2008 10:25 PM (GMT 0)
Thanks Lynnwood, Carol, Ginny, and Barb--
I didn't know you guys got it like that too. I'm sorry about that. I feel silly freaking about it, but with the side effects and my voracious appetite on them, it scares me that I will really blow up. It also scares me about the adrenals, since they were attacked first. so I just worry about Addisons. But it sounds like you guys have some of those worries too. It's really awful, sort of like a final thing in a way. But I suppose you take them to keep things from getting worse, and synthroid isn't killing me either. I hope they find some underlying cause to this whole thing and somehow heal us, or at least stop the worsening of things. For a while I wanted it, usually when I was tapering down, but the way the infectious disease doc spelled it out, it sounded really lousy, like everything I have is just going to keep getting worse. I never thought the liver would be the least of it. I figured that would be the thing. Thank God that that is okay. And thank you for listening and replying and all your help and I'm sorry that you are all in the same boat. I feel like a baby. I just keep hoping whatever I have will go away somehow and hoped the TB. I wish the docs had the same hope. Thanks for listening.
Posted 8/29/2008 11:57 PM (GMT 0)
((((Marji)))),

 

I think we all have times when we feel like things are going to keep getting worse. How can we not feel that way with lupus?  It's a vicious cycle of issues that we have to deal with all the time. It's hard to stay positive! 

 

You're not alone in how you feel about the prednisone.  It's a love/hate relationship that I have with it.  I love it because it keeps me alive, LOL.  But I hate it because of what it has done to my adrenals, and my physical appearance.  I'm learning (and it's taking me a long time) to accept my reality, and move forward.  We can't change what has happened to us, but we can for darn sure make our futures as bright and positive as allow ourselves do so. 

 

You're not a baby, and please don't feel silly.  Your feelings are valid and totally allowed! Have hope Marji. That's the best thing we can do for ourselves. Have hope.

Love you,

Ginny 

Posted 8/30/2008 12:49 AM (GMT 0)
Marji, I have the love/hate thing going with prednisone too. I think a lot of us are on long term steroids, myself included. My goal is to get to the lowest dose that I can tollerate. So far I haven't been able to get below 7.5, but later this fall, I'm going to start a very slow taper and hopefully eventually get down to 5mg and stay there for a while. I'm not sure if I'll ever get totally off prednisone. You are not a baby. Living with chronic illnesses is like a rollercoaster ride that you can't get off. Sometimes you do okay and can deal with things, other times you hit bottom and can feel kind of hopeless. The one nice thing is that you have all of us here to support you when you go through the rough times. ((((hugs)))) and take care.
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