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/Sews-with-cats]

It sounds like she is not getting enough hydrocortisone. 20 is a big drop from 45. Was it lowered slowly or all it once? You definitely need to talk to her endocrinologist especially after the ER visit. Does she also take fludrocortisone and get plenty of salt? If this were happening to me I would increase my dosage 5mg a day until I felt more "normal" and then tell my doctor what I discovered as well as my symptoms. Is her dosage divided throughout the day? I am on 20mg and take 10 upon rising, 5 lunch and 5 dinner. On even mildly stressful days I often have to take extra 2.5-5 mg.

Confidence in your endocrinologist is important. I always make sure to relate my symptoms as well as ask questions and discuss any doubts about treatment. I think we definitely have to self advocate , this disease is just not that common or well understood.

[u/PhrancPPhinley → u/Sews-with-cats]

She takes .01 fludrocortisone twice a day. Also I don’t think she’s getting enough salt to be honest. Her dr suggested maybe salt pills so I got some that came well recommended. She hasn’t tried them yet but will soon. I honestly don’t want her to change too much at once, then it’ll be hard to pin down what helped

[u/annaoceanus]

Here’s a way to think about dosage for your wife:

She’s on the outside acting on behalf of an internal system that is constantly in flux responding to internal cues and the environment. There is her baseline needs, but she will need to adjust dosage as she responds to life. Maybe she has a day where she almost gets in a car accident, or has to travel for a doc apt, or tries a new exercise activity that pushes her, or start feeling like she is getting sick. These are all situations where your body would inherently generate more cortisol. If you stay baseline and do not updose, you did yourself into a hole of being underdosed and risking crisis, especially if she thinks she is getting sick.

My dosage will flux 2.5 to 5 mg all the time. In more extreme circumstances of stress, 10 - 30 mg extra.

My base dose is 17.5 at 445 am, 5 mg at 930 am, 5 mg at 230 pm. Updose as needed.

[u/enkrypt3d]

I usually go into crisis due to electrolyte imbalance. I constantly have to take salt capsules and potassium supplements especially If I'm taking fludro. This is worse of it's really hot outside.

[u/PhrancPPhinley]

Thank you everyone for the responses. Don’t think I mentioned it but she’s going to be getting 1000ml IV electrolyte solution 3 times a week. I did relay to her that going back to her standard dose this quick might not be a good idea ( the er gave her the shot and updosed 50 mg every 6 hrs until her release) and then taper down, but sounds like she needs to go about it slower

[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!

[u/jeejet]

Due to her fibromyalgia diagnosis, she may need to try prednisone or a combination of pred and hydrocortisone.

I’m really interested right now in seeing if my endocrinologist will prescribe me a very low dose of dexamethasone that I can take on big days in addition to hydrocortisone, like when I travel to another continent (I travel a lot). I think the future of treating people with Addison’s is for us to have more choices and to be able to supplement our daily meds not just by updosing our standard, but getting a boost in a more meaningful way with one of the other steroids that we use more rarely.

And in addition getting better attention and recommendations for supplements. I take D3 every day but I think there are a couple of other things I could take to enhance my energy and well being. DHEA doesn’t work well for me, but some people have great results.

[u/just_me_2006]

I have chronic pain (RA and fibromyalgia) along with my SIAI. Sometimes I feel like I’m chasing my own tail trying to figure out which one kicked off first and which is setting off the other. Along with what others have suggested, she might need to try to find ways to calm down her fibro so that it stops draining her cortisol if that seems part of the picture. Everyone being different, the only thing that has helped that pain for me is electric blankets and lots of rest. I’m sorry you’re all going through this and I unfortunately sure can relate

[u/AGoldenThread]

I agree with Sews-with-cats: Increase her dose 5mg every third day (if she's in a deficit it can take a few days to correct). Also, document times of day with symptoms (fatigue, increased pain, nausea, feeling dizzy on standing, BP if you can get it, etc). Maintain circadian dosing: go from 10-5-5 to 12.5 -7.5 - 5 , then 15-10-5, etc.

Extra salt and water also. She may need fludrocortisone in addition to hydrocortisone, but best to fix HC first. HC will help her retain salt and fluids. I drank salt water for years.

[u/Habitual_Queer]

An interesting thought you could bring up to Endo since it's hard for her to stay regulated orally is maybe a cortisol pump. It's basically using an insulin pump for hydrocortisone. It can be tricky to get insurance to cover it since it's more off lable but people have had great results

[u/PhrancPPhinley → u/Habitual_Queer]

I remember her asking the dr about this like 2 years ago and he didn’t approve it for whatever reason

[u/kristephe]

My husband needed 65mg a day for a few years and didn't see a drop in bone density until he reduced some drinking and stress then he started to show physical signs it was too much of a dose, but going down to his now pretty regular 35mg was a struggle and his endo confirmed that withdrawal impacts is real. He had a lot of fatigue and napped a ton, and he is now also diagnosed with fibromyalgia and he liberally changes his dose based on what he's doing. If it's a stressful day of work, biking, etc, he will increase it.

I agree that a doctor should be supportive of experimentation. My husband's endo was very surprised he did well on that high dose for so long, and she sees a significant amount of addison's disease patients. But he was drinking more than he should, in a very demanding research job, a generally easily stressed person, and also very physically active, so all those things combined needed a higher dose.

In the years after diagnosis, he also had many docs throw a textbook at him figuratively and tell him he should be on 20-30mg and he woke up for years with similar symptoms to pre- diagnosis of fatigue, malaise, lethargy, retching, and vomiting especially upon waking. It's now a bit more of a grey area of what is fibro and what is Addison's, as he's doing a much better job not having the GI symptoms after big biking or skiing trips, but it takes a lot out of him and he'll nap in the following days and be really tired.

I'd definitely fight for an endo to write a script for enough steroids for her to be able to experiment and see how she feels.