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← Return to Prednisone to Kevzara
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I agree completely. You got this figured out. I think drugs like Kevzara are very useful in trying to stop any subsequent inflammation that may result from the taper. Your case in point. I even think it may be necessary for drugs like MTX or LDN to even further widen the blanket. My education in steroids comes from my wife. She has GBM. I poison her body every day by giving her DEX. But as you pointed out, its not easy to say her issues are strictly AI and cortisol. If she builds any inflammation she goes into a coma and seizures increase. She has had meningitis, hydrocephalus, sepsis, and increased risk of infections. So we are on the same page. The human body can have a million things going on that are not as easy as saying you need to reduce prednisone. My wife is a testament to that. Simply restarting her adrenals is not the answer. The same applies for most with PMR. Somehow we all picked it up. But that opens a whole Pandora's box to what might be lurking in the background.
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I don't want to equate GBM with trigeminal neuralgia but I understand how any inflammation causes your wife to go into a coma and have more seizures. I had a small problem in the area of my brain stem. Classical trigeminal neuralgia is caused by pressure on the trigeminal nerve close to where it enters the brain stem. The brain stem is the lowest part of the brain that merges with the spinal cord. In most cases the pressure is caused by an artery or vein compressing the trigeminal nerve.
For many years before PMR was diagnosed, I took prednisone for trigeminal neuralgia in spite of a neurologist saying prednisone wasn't used to treat trigeminal neuralgia. I referred to trigeminal neuralgia pain as my "inflammation alarm" because the electricity was worse whenever my inflammation markers were too high. Eventually, I needed microvascular decompression (MVD) surgery.
https://www.neurosurgicalatlas.com/volumes/cranial-nerve-compression-syndromes/trigeminal-neuralgia/microvascular-decompression-for-trigeminal-neuralgiaI felt vindicated when the neurosurgeon said prednisone was probably helping the swelling and inflammation in the area where he did the MVD surgery.
I took a step by step approach to solving my problem of long term prednisone use. First I had bilateral knee replacements which helped me decrease my Prednisone dose.
After MVD surgery, I was able to decrease my prednisone dose some more. The facial electricity was one thing but the stress from it was something else. I was fearful of the wind and brushing my teeth. There was no fight or flight response. When my face was electrified, there was absolutely nothing I could do until the electricity stopped.
Just for context ... when I posted that message looking for alternatives to prednisone, the person who responded to me said she was in a coma for 6 months after having an adrenal crisis. She was the one that figured it all out. She said she didn't want me to suffer her fate.
When I started telling my doctors about adrenal insufficiency --- Actemra was offered to me.