For the last 4 years I’ve been dealing with something called adrenal insufficiency caused by my steroids. It all started with increasing my immunosuppressants. My body needed more immunosuppressants but it made me severely anemic so I had to start steroids to move on to another drug.
Bare in mind before this I was mostly healthy besides I had nmo but it wasn’t active. The nmo has been stable years but I was growing older I had to increase my dose. I couldn’t stay on the lower dose just in case and I couldn’t come straight off it.
So we decided for me to go on a new immunosuppressant -mycophenolate. My immune system was off balance so I had to take steroids to keep it suppressed to prevent attacks. It was supposed to last 2 months while I increased my new med.
Starting the new med was fine, all stable. But when I was supposed to come off the steroids we found out my adrenals has stopped working because they didn’t have to. It’s a catch 22, be on steroids and be severely chronically ill or come off and have adrenal crisis. This is when my health began to fall apart. The anemia was better and this med was working but I was stuck on steroids which is really bad for the body.
Within a year I needed s wheelchair due to the severe fatigue, muscle wastage and pain. We gabe my body time to see if the adrenals would wake up but they didn’t. So I had to stay on them for almost 5 years just waiting for them to wake the heck up. The more time that passed the worse I got and more medications I had to take. It was miserable especially because before that I’d been pretty stable and functional.
Let’s learn more about steroids for s moment:
CORTISOL- is the stress hormone and you can die without it. It controls blood sugar, immunity, metabolism and bone density.
STEROIDS – are used to treat inflammation or hormone irregulatipn in the body. Steroids work really well at whatever they need to do. BUT long term steroids can affect you badly. It can suppress your immune system too much, cause weight gain, muscle wastage, diabetes, fatigue pain, osteoporosis and all kinds of different issues. It can also cause your adrenal glands to become lazy.
Back to my story:
Adrenal insufficiency SERIOUSLY messed me up. It was unbelievable steroids could do all of that to me. I felt stuck and hopeless like I would never get off the steroids and always feel so bad. It seriously affected my mental health. I was in bed 95% of the time and couldn’t go to school or see my family and friends because I was so exhausted.
After years I’ve finally managed to get off them thanks to an endocrinologist being brave enough try taking me off them. I am doing so much better without the steroids. My muscles are less shaky and stronger. My energy is up 10% and I’m managing to be out more. My pain is less because my muscles are stronger. And I have lost some weight. I gained like 3 times my weight on steroids so I’m glad about that!
I honestly feel like they’ve poisoned me but I realise they’re keeping me alive & as much as I’d like to flush them down the toilet I’d regret it soon enough.
I’m excited to begin getting some of my life back. To start training my service dog, being a teenager and just generally going out more! I’m excited. I’m hopeful. I’m mentally doing better now I don’t feel so hopeless.