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 as I was hitting puberty. The Azothioprine increase gave me severe anemia, so I had to swap to Mycophenolate. These drugs help me manage my autoimmune disease Neuromyelitis Optica, without them I may relapse and become more disabled or die. So going off it all together wasn’t an option. During the time of decrease and increase of Mycophenolate I had to start steroids to continue to suppress my immune system. I had to stay on them until my new immunosuppressant was at its correct level. But when we tried to reduce the steroids I got really sick. My adrenal glands had gotten lazy and I was now not producing cortisol. If I went off of them I’d get really sick. But being on them in order to stay alive, but they made me really sick too!
Before this I was mostly healthy besides being blind and some chronic pain from my NMO, but it wasn’t active. The NMO had been stable for years. I haven’t had a relapse since I was
This is when my health began to fall apart. The anemia was better and this medication was working but I was stuck on steroids.￼ Within a year I needed a wheelchair due to the severe fatigue, muscle wastage and pain. We gave 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 imbalances 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 felt 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. 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’m able to walk again. I have lost some weight. I gained 3 times my original weight on steroids. I guess one good part of steroids is I was hungry and eating, prior to that I was very underweight due to Bulimia.
I honestly feel like they’ve poisoned me but I realised they’re keeping me alive & as much as I’d of liked to flush them down the toilet I’d regret it soon enough.
I’ve been planning ahead for my future and I’m excited about it finally. I’m hopeful. I’m mentally doing better now I don’t feel so hopeless.