Prednisone or cortisone every day, what is it like?

Well, it's starting to look like I may have to take pred or cort or maybe some form of either or both every day and my family doc scared me so much about taking pred too much because I told her I wanted to take it everyday.  I wondered if anyone here is on it or another corticosteroid every day because I will probably be faced with can I live with the way I am or do I have to take it.  I'm pretty sick off it, but then it can make you really sick too.  If there is anyone willing to talk a little about that if they have an endocrine problem or not.  The doses probably wouldn't be as high as a lupus dose.  Also interested in every other day type therapy. 

It's a horrible trade off, I think, the way my pc doc explains it.  Until now I just took it about 4 times a year, sometimes six.  Usually clusters and then months with nothing.  Thanks in advance for any help you can give with this.

Hi Marji,

 

I've been taking different doses of prednisone every day for the past 7 years.  It has saved my life, literally!  It's different for everyone, but most people start off on a high dose and then gradually taper it down until they're at a dose that is keeping everything "happy", but not too high either.  My maintenance dose is between 5mg and 7.5 mg.  I"m almost back down to that now.

 

Overall, I think prednisone's pros outweigh the cons.  It gets such a bad rap, and it doens't deserve it!  It's extremely effective at getting rid of our inflammation.

 

The trick is to get on a dose that will combat the inflammation and put your lupus in a quieter state, then very slowly, (2.5mg every 2 weeks), taper down to a dose that keeps you in that quiet state.  It takes some time to figure it all out and see what your body likes etc, but it's worth it.  Oh, don't be surprised if when you're on a higher dose (20mg or higher), that you experience some anxiety or depression.  It's very common, but goes away when you enter a lower dose (15mg or less).

 

I'm being tested for endocrine disorders right now.  So far my thyroid is fine, and my adrenals are good too.  I'm having other issues, like hypoglycemia that is prompting the tests.

 

If I had to stay on prednisone every day for the rest of my life I'd do it too.  I feel so much better when I'm on my proper dose.  It's worth it for me to be on it long term.

 

What other meds are you on for your lupus?  I'm taking Imuran (Azathioprine) along with the prednisone.  They work great together.

 

Hope this helps Marji!

Ginny

Thanks ginny, lynnwood, I feel less afraid. I'm already hairy without the steroids so I'm afraid I'll be a wooly bear on them all the time. I'm hoping that I can take 5 mg every other day for maintenance because of my liver and pills (I'm allergic to birth control pills, something in them and don't want to get allergic to the pred or cort pills) and then more when things get bad. I'm afraid of the bone density thing due to my sunlight allergy and vitiligo, I never go in the sun and have none through the windows, wooden blinds and curtains and so I know you need sunlight for vitamin d to process calcium. I've craving milk alot since this sunlight allergy. I did have a real problem with the one shot they gave me for the ACTH stim test and I couldn't eat enough and bad cravings. I did feel much better though and was more active and went outside for a long time, but then had real problems afterward. I hope the steroids make the sun sensitivity better. Unfortunately that goes with liver disease as well as ai.

I do have adrenal insufficiency they are just trying to figure out if it is my pituitary or adrenals. Pituitary and hypothalmic deficiency is part of non-alcoholic steatohepatitis, as is hypo/hyperglycemia.

Ginny, I just take plaquinil. I've asked about cellcept, but they won't give it to me. I was using a ton of protopic ointment for my vitiligo for a few months and its active ingredient is the same as rapamune, a strong anti rejection organ transplant drug like the other drugs they give for lupus, and it made me feel much better even getting it through my skin. They told me I was using too much, but it made me feel alot better, though too much can make you sick. I wish they would consider this, but I think they think that I may get alot better once the endocrine is treated, so maybe that will be the case.

Lynnwood, the bad thing about that bone density is that I have a plate and four screws in my neck, which is collapsing and full of arthritis and is compressing my spinal cord by 50% and the next surgery would be probably more debilitating so they tell me to wait. And I have scoliosis, disk problems and stenosis all through. My saving grace is my thick bones. I can't imagine what would happen with my tight muscles that spasm alot and my corkscrew knobby spine if the bones weren't strong. That does scare me. But then, the arthritis and scoliosis can heal and go away or get alot better if the source of it, probably the endocrine contributing, is treated.

I'm with you on the cravings, too. I don't think that she is going to let my rheumie do a whole lot for flares, I'm afraid. She seemed upset that with my history I was given any at all, but I usually only get them if I can't breath or have other problems. I tried to explain that the polyendo preceded all my other problems, including bad ai, and started 15 years ago.

Well, thanks for making me feel better. My primary care really scared me and I know she is right in some cases, but you guys seem to be doing ok. And the pain relief and energy would be a big plus. I was considering holding off on treating the problem if she suggested it because I was afraid I would feel worse and be in worse shape, but I feel better about doing it. If I have addisons, it would be just starting and I'd have time, I know not treating it is a serious decision, but with all the other problems I have, I just figured it probably wouldn't be of much benefit from a life extending thing. You have made me feel that it could improve my quality of life rather than messing it up. Thanks so much, it means a lot to me.