Back history: Went into the ER for a migraine, came out with a lupus diagnosis. Turns out the migraine was because my kidneys had failed, and I landed me a membership into the Lupus Club.
Because the condition was so severe - and fatal - they put me on 60 milligrams of prednisone. I stayed on that 60 milligrams of prednisone for 3 months, after which they dropped it to 20. I'm still on that 20.
Problem: Prednisone can make normal people restless and sleepless. I am Type 1 Bipolar, which means it can make me *psychotic*. It had already rocketed me into full blown mania and a nasty, self-destructive mixed episode once, just a few weeks ago, but even as they've dropped the dose, I'm still not getting more than 4 hours of sleep a night.
For mentally ill people, this is an especially bad thing. We lose our best defense against episodes and I'm terrified of losing what little defense I've managed to build back up.
I guess my question is: Is there any drug, ANY at all, that does the same thing prednisone does without the insomnia? I'm on plenty of sleep meds/sedatives/psych meds known for their calming properties and they don't make a dent.
I have lupus nephritis, if that makes a difference.
Written by
quirkytizzy
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The previous page says there are many forms of lupus nephritis and only a biopsy will determine which - I assume they did one? I imagine pred is the fastest working option - and obviously there was a good reason for them using it but it does look as if they could add something else that would help reduce the pred required.
Equally, I assume you did tell them about your bipolar diagnosis and the detrimental effect on your sleeping patterns? Would it help if you got your psych care team to speak to the rheumy care team?
I can only sympathise. I don't have Lupus or bipolar disorder, but I have primary Sjogrens with RA and whenever I've taken oral steroids they have made me completely manic - to the point where my last GP refused to prescribe me more than 20mg for only a week and then I tapered very slowly off over six months. I feel you should be offered an immunesuppressant as well - mycophenolate is usually the one prescribed for Lupus Nephritis I believe. What does your rheumatologist say?
Steroids are often prescribed in severe cases of lupus because they are much faster acting than other treatments and help to limit/prevent any further damage. They are generally not a long-term solution because of the many negative side-effects that they come with. Other treatments such as antimalarials and immunosuppressants are usually prescribed for long term maintenance of lupus, but they can take months to reach effectiveness in the body.
Have you been started on any other treatments yet?
If you need more information about lupus and the kidneys, we have a booklet that you can read and download at lupusuk.org.uk/wp-content/u...
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