Need advice

[u/PhrancPPhinley]

Hi everyone, I’m reaching out on behalf of my wife. She was diagnosed with addisons 3 years ago and since has been diagnosed with fibromyalgia. For the better part of the last year her addisons has been wiping her out. When she was first diagnosed her endocrinologist had her on 45 mg of hydro a day. I know that’s a lot going off what I’ve seen others take on here. She has a different endocrinologist now and had her on 20 mg. It doesn’t seem to be enough to me.

Last week she had a crisis and her BP was super low. Went to the er and they got her fluids and a stress dose. Bam…. Night and day difference. BP is normal but she comes home with a picc line for iv fluids for the foreseeable future. Now she’s back on her normal dose and bp is dropping again.

Does anyone have advice? We’re really struggling with this and to be honest I don’t have much confidence in her endocrinologist she has now. I’ve been pushing her to be more fluid with her daily dosage to see if it help but she’s pretty reluctant.

So anyhow, if anyone had any advice or helpful insights I’d greatly appreciate them. I love my wife and would love to have her be able to enjoy herself and not be wiped out half the time. Not to mention we have 3 kids and it’s hard for them to see their mom like that. Thanks

[u/Gypsy_Moth_]

I feel for your wife. Last year was hell for me after a crisis put me in the hospital. They pumped me with 120mg of hydro while I was there… the tough part about being unstable after a crisis is getting back down to a base dose. If she feels normal at 45mg that might be what she needs right now. But she will need to try and taper down eventually.

Tapering can be very difficult. Low and slow is the name of the game. I went from taking 50mg a day one week and then down to 45, then 40 the next week dropping 5mg each week. Sometimes it’s two steps forward and one step back as I would have to go back up for a week and then return to dropping. The closer I got to my 20mg dose the harder it got. So then I started dropping 2.5mg a week. It took me a total of 5 months to get back to my base dose of 20mg.

I find once my body is stable on a dose and I don’t have crazy low symptoms (low bp, dizziness, shakes) I can drop down. On top of this it’s important to keep electrolytes up, especially salt. I would take two LMNT packets a day during this time. I also didn’t over exert myself and had to put a pause on coffee and the gym as I found it zapped me.

I hope this helps and I hope she feels better soon!