My husband had the same exact experience taking dexamethasone for his auto immune disease. The side effects were bad. He couldn't get any sleep and was completely strung-out. There was also concern for long-term steroid use. Now he goes in for steroid shots as needed for extreme flare-ups. It's tough because the inflammation travels: skin (body-wide rashes), lungs (COPD), stomach, head, leaving granulomas behind. The disease is still unknown (after 6 years of going to good docs at UCSF), with a current leaning toward histiocytosis. He went from cycling 20 miles a day to work, to not working at all and being hyper sensitive/reactive to everything. It’s so weird. But his mind and spirit, (and sense of humor!) are very strong.
He didn’t try taking dex at night, for it to kick-in in the morning, as you did. That’s a good suggestion. We brought all of his unused meds back to the pharmacy already, for their disposal program. He takes GABA (a supplement, approved by his doctors) which seems to help with the nervous system response, and it calms him to help him sleep, along with magnesium.
He was also prescribed hydroxychloroquine (for inflammation), but there were so many drugs that he tried, I can’t recall why it didn’t work or why he was taken off. He was a guinea pig for awhile.
I feel for you, Mike, and wish you well. I make lavish healthful meals for my husband, which is fun, but I’m gaining weight! And not from the food, but from the accompanying wine ! My de-stressor needs less calories ! :-) |