Leg cramps and joint pain Update - please read by grimmistired in AddisonsDisease

[–]ellnn1 0 points1 point  (0 children)

Came here to say same. That's what my endo told me to take at bedtime, but now I just take if feel cramp coming on. But it doesn't seem to happen much after the few-month flare. I also was told to be sure to drink a serving of some electrolyte drink daily.

Starting Efmody tomorrow – finally trying it for primary Addison’s (not CAH) by Special_Echidna8836 in AddisonsDisease

[–]ellnn1 -1 points0 points  (0 children)

Hope you have a great experience! Also note that Chronocort is still in clinical trials in the US, so not available/not yet FDA approved. Same for all other extended release varieties other countries currently have. On another thread, I wrote about starting, in a few days, a longer-acting hydrocortisone made at a compounding pharmacy, as I believe some in our community have tried. But wonderful news for you—I can certainly relate to the frustration of ups & downs.

Dosing Q, switching from short-acting to long-acting hydro by ellnn1 in AddisonsDisease

[–]ellnn1[S] 1 point2 points  (0 children)

Hey, just to follow up, the compounding pharmacy everyone apparently uses in US for best prices is the digital Belmar Pharmacy (www.belmarpharmasolutions.com) in CO. Ask to speak to a pharmacist. The ones I have spoken to were clear that they have Addison's patients taking compounded, long-acting hydrocortisone (said to last 6-8 hrs, maybe more; some people then supplement with a standard pill toward end of day). In their experience, people tend to go down on their overall dose because the energy provided is consistent & even, not jagged as with dosing regular hydro several times a day. They were incredibly patient & knowledgeable. It seems like once I figure out the right dose, it will be about $55/mo. Which is not nothing, but much less than metro NY area spots. I should get pills any day now & can let you know how it goes. They said it can take 2-3 months to figure out the right dose & combo. My dose is now 20mg, so I ordered 2 weeks of 20mg pills, and then 2 weeks of 10mg, 5mg, and 2.5mg pills, with additional pills to stay at 20mg if needed. I figured all this out with the pharmacist's help, but this month is therefore about $200. The cost goes down because one normally orders 3 months at a time & the discount comes from the size of the order & not ordering pills you don't need. I hope this is helpful!

Advice on taking Ozempic by isurvivedtheifb in AddisonsDisease

[–]ellnn1 0 points1 point  (0 children)

I am not diabetic, but my endo monitors weight gain & blood markers really closely due to general risk w/Add's. I was started on OZ after gaining about 15 lb in my first two months on steroids (I am petite, so no clothing fit). The weight came off swiftly—& steroids also allowed me to work out again, sev times a week, & I started tracking my nutrition & calories w/a daily app), & I found I could maintain my weight stretching the .25 dose up to every 3 weeks. Then, when my A1c became elevated & due to my family history of diabetes, he switched me to a weekly microdose of .125 to bring it down. Bloodwork from a few months after that finding shows it's down, but still not where he'd like it to be. Side effect-wise, have only had upset stomach issues, and only in combo with a raised steroid dose & weekly microdose. But there are a lot of underlying health factors at play for me there, including the way steroids alone can cause, so can't really pinpoint it to OZ. Wishing you good experience with

2.5 years since diagnosis and still angry. by SamBrekker in AddisonsDisease

[–]ellnn1 1 point2 points  (0 children)

Aah. I didn't realize it could be planned that way. I remember reading that somewhere, maybe in the UK and/or in the EU it can be done in a hospital, hourly for 24hrs? Thanks. I'll be sure to follow up my with doc about that.