What to do when the medication is gone?

Like many people with autoimmune diseases, I have a lot of overlapping conditions and many symptoms. My most limiting and disabling symptom right now is fatigue. The fatigue is caused by several things, among them strained adrenal glands. There have been just two things that have helped the fatigue, and I may lose both. Then what will I do?!

First, I have a form of sleep apnea. I got a CPAP machine that helped a lot!!! I loved that thing! Unfortunately, I 2014-04-23 11.03.16
developed a complication and now I can only use it for about an hour every other night. Don’t even get me started on the frustration with that! I’m still working with my sleep doctor on that, but he admits there are limited options for this particular issue, so I may just be stuck. Treating my sleep apnea would help a lot, and might be good enough that I wouldn’t need the other thing that’s worked.

The other thing is an over-the-counter supplement called Isocort, made to support the adrenal glands. It’s been amazing for me! A tiny pill or two makes me able to function fairly well every day! Sure, I’m not about to go jogging, get a job, or clean the apartment, but I can run errands, socialize, and just feel ok. I love it! Unfortunately, they stopped making it. When they stopped, patient communities online were very upset. It was the go-to nonprescription solution for adrenal insufficiency. The prescription solution is a steroid, which causes all sorts of problems for many of us. When production stopped, everyone floundered. They found alternatives with varying success. I tried a form of the most popular alternative. It helps a bit, but not at all like the Isocort did.

I now have a 4-6 month supply of Isocort left. And then what? Will I have to go back to feeling that constant strain to function?

So now I feel stuck. I have some more options, but they feel unlikely to work at best. If Isocort was still in production I wouldn’t be worried. Sure, I wouldn’t want to be on it for the rest of my life for various reasons, but I’d be glad to use it for a few years if it helped. Oh, if only!

I’ll try more Isocort alternatives. I’ll keep working with the sleep doctor. But what will I do if they all fail?

3 Responses to What to do when the medication is gone?

  1. Lorna says:

    I don’t know much about this. So had a quick read round. So bare with me. From what I read adrenal cortex works best if taken from source, so isocort used sheep adrenal gland and not much else. Then they changed to veg based adrenal?? Like other makes which isn’t the same thing as sheep. I like to know why I can’t have things and why there isn’t anything to replace it. I understand your frustration, then dawning horror that there isn’t much else. Some days the crap is sure thrown at us people who have bodies that don’t like us much.
    I hope you find a veg based one that works or somewhere in adrenal research there is a breakthrough.
    I love having your emails arrive as i feel I know part of you now.
    Hugs xx

    • chronicrants says:

      Lorna, I also heard that history of Isocort. I didn’t start taking it until it was already reformulated to the veg version. I don’t know if the other would have worked better or worse for me, but the veg worked great, so no complaints here! If only they still made it…..

      Thanks for the support. I feel like I know a bit of you, too, from all of your wonderful comments!

  2. Hi, you might find some solace on my blog. I’ve been through chronic fatigue and I have a seven year old who is recovering from it. I look at at from the angle of why we disconnect with parts of ourselves which then affect the areas and systems of our body.

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