Prednisone a Necessary Evil

The Good, the bad and all in between.

This is one of those damned if you do, damned if you don’t situations. Prednisone is one of those drugs you never want to take, but it does save your life. Before I was diagnosed with sarcoidosis, I had a persistent cough, thinking it was a cold that I could not shake. December 2019, they found sarcoid in my lungs, lymph nodes and heart. For me, my lung tissue was hardening with granulomas that were calcifying, which is why I had that cough. One had calcified in my heart, causing a complete block of the electrical system. (read ‘my story’ on my blog and you can see the rest of the story)

I instantly started on Prednisone to try to stop this process, the process of hardening my lungs and heart. I had no choice, this had to happen fast as I was loosing function in both of these organs. I knew the side effects where not ideal, but the consequence of not taking prednisone were also not ideal. You do what you have to. As soon as I started, 60 mg, the side effects started. Lucky for me they were minor. For those that do not know, prednisone can cause diabetes, osteoporosis and many more major health concerns. I gained weight quickly, within two months, my clothes, rings and shoes did not fit. Was I eating poorly? not really, I was just eating a lot. Prednisone stops the signal to your brain that you are full. You live in a ravenous state at all times. Everyday I fought the urge to eat, the urge that I was hangry.

Sleeplessness was another major initial symptomI. I could not sleep, I was up till 2 or 3 in the morning, every night. I wanted to sleep, but my body would not let me. Your brain does not stop working, you are in a manic state, a state of go, but also fatigue. You have a disease that needs rest but a drug that says go go go. …a constant battle, one that has no winner. A battle that leaves you feeling unrested and fatigued. Luckily as time went on this symptom normalized and I was able to sleep again.

Also my body ran hot, embarrassingly hot. I was always sweating, beads of sweat dripping from my forehead. Being a school teacher, this was a very obvious symptom that many of my students recognized or commented on. I was asked, almost daily, if I was OK. The students would be cold, I am in Canada and it was winter, and I would be dripping sweat. My students were also asking if I was OK, and they worried about me, so sweet.

Prednisone has so many side effects that are more serious therefore my doctor really started to monitor me. They monitored my blood sugar, my kidney and liver function as well as my blood count. I even had to do a bone density scan for a baseline. This is when I realized I needed to support my body anyway I could. I knew I did not want to be on this medication or any others for the rest of my life, however I knew I needed to put out the current fire. I wonder daily what my long term strategy will be, we are still working on this.

Prednisone does have positives, with in one week I could breath. I could take deep breaths with out coughing, with out struggle. I had no idea how restricted my lungs had been, till I started taking this magic little white pill.

The taper off of Prednisone began after being on 60mg for 4 months. Prednisone is not a long term solution, so they try to get you off of it. I tapered down 10 mg a month till I hit 20mg. This was not at all challenging for me or my body. I noticed that some of the side effects were less pronounced, like the sweating, but I was OK. Once I hit 20mg the idea was to go down 2.5mg every two weeks till I was off. I did not think twice about it, I had been tolerating the taper very well, till this point. Three days after I reduced to 17.5mg I starting having side effects. I got a headache that I could not cope with, I went to the hospital. This was a head ache so bad that I could not form a sentence, I could not lift my head, it was bad. On top of the head ache I had leg cramps, intense leg cramps. Having ‘Charlie horse’ types cramps in my legs constantly. It was uncomfortable to walk, to sit, to sleep. The ER said they could not find anything, I was fine, they sent me home. I went to my GP the next day and she said to go back up on my prednisone and see what happens. Well guess what, the side effects went away. I felt great. Unsure what to do, I tapered even slower till I could see my sarcoid specialist. I got in to see my specialist about two weeks later, he suggested fighting through the side effects, my body would adjust. He wanted me off this medicine as I had been on it for too long, my body needed a break. So back to the original schedule. It is then I went back to knowing I had to advocate for myself and try to help myself. I looked up what Prednisone was actually doing; could I help myself through these side effects?

I found out that prednisone slows or stops your adrenal gland from working properly. So at 17.5 mg my body was needing my adrenal gland to kick back in, I had to find a way to support it. A great friend of mind recommended the book How to Tame Your Dragon, I took the advice the book had, what could it hurt. I started to use an oil blend called En-R-Gee on my feet (in the arch) and to add a drop of Nutmeg under my tongue. I noticed that I could sustain 17.5mg. I continued the taper smoothly till 10mg, noticing again my legs started to cramp and were just achy and so sore. I started to take En-R-Gee twice a day and also starting using the oil blend Deep Relief on my calfs. It really helped – It made my taper off prednisone doable the first time and quickly.

I can now say that I am off prednisone and am having no side effects from the medicine. I am still supporting my adrenal gland, hoping that this will help some of the weight come off.

Everyday I learn something new about this journey and ways to balance my doctors advice, my body and beliefs. I am not one to take medicine then add more medicine to combat the side effects. I know inside, inside my heart, that my body wants to heal, it wants to be supported to do what it knows how to do. I am a proud fighter and will continue to advocate and learn along this journey. I have a simple motto, live as healthy, active and happy life as possible. It starts with fuelling your body to work efficiently.