Okay, so maybe I'm being a little dramatic but taking prednisone does feel like you're making a deal with the devil sometimes. It might decrease the symptoms from your disease but in return, you’ll get a long list of side effects.
Prednisone is often used in autoimmune conditions as a means to suppress the immune system. In autoimmune diseases, Western Medicine believes it’s our immune systems attacking our bodies thus if we suppress the immune system, we suppress the attacks leading to less symptoms.
Before and during a high dose of Prednisone
I started taking Prednisone in 2016 after an exacerbation of Myasthenia Gravis where my breathing was impacted and IVIG alone wasn’t helping. Typically, a prednisone dose ranges from 5mg to 60mg daily depending on the condition it’s meant to treat. Small doses (under 10mg) and short term use (less than 4 days) substantially decrease the risk of side effects. I was prescribed 10mg daily with the orders to slowly increase to 60mg per day. Not a small dose! I’ve also been on Prednisone for 4 and a half years now... NOT short term. One thing I wish I would have been told by my doctor was how difficult it would be to come off of it. He warned me of the potential side effects although I never quite grasped how serious they would be until they began to happen to me.
After beginning Prednisone, I quickly realized that I felt really good after being on 30mg daily. I called my doctor and told him that I did not want to continue increasing the dosage if I felt good on a lower dose. He agreed with me and so I stayed at 30mg and for quite some time. I actually had months of feeling pretty good between February 2016 and October 2016z and it seemed that Prednisone was doing it’s job.
Fast forward to October 2016 when the side effects began. My vision in the right eye was off in a different way than I had experienced with MG. It felt like I had something covering my pupil and it was like looking through a grey cloud. I noticed it especially when I was trying to read something. I would blink a lot to try and get rid of the haze but nothing helped. In fact, it would only get worse over the next month. I scheduled appointments with my Optometrist who found cataracts in both of my eyes (as a result of Prednisone) but said that they were equal in size and shouldn’t be affecting one eye and not the other. She couldn’t find anything that would be causing my chief complaint but decided to refer me to an Ophthalmologist. He also couldn’t find anything but didn’t specialize in Myasthenia Gravis so he referred me to someone who did. I was finally sent to a Neuromuscular Ophthalmologist who ran a bunch of tests that came back inconclusive for MG related issues or any other red flags for that matter. At the very end of our visit, she opted to do one more test and go figure, it came back positive. The test concluded that I had central serous retinopathy caused my high amounts of cortisol. It causes partial blindness in the eye but it would (hopefully) go away once I decreased and weened off Prednisone.
After that result, my neurologist decided to do more testing to see how the Prednisone had impacted me internally. It was already obvious I had gained 20 pounds (despite a consistently healthy diet) and developed “moon face” which is common with prednisone use. Your face becomes swollen and your cheeks round, resembling the appearance of a very round moon. Fun stuff! After some testing came back, it was determined that I also had become anemic and pre-diabetic. A bone scan would reveal Osteopenia and a pap-smear would reveal cervical cancer cells as a result of my own immune system being suppressed.
High doses of Prednisone resulting in Moon Face back - 2016
Here I was at 31 years old with cataracts, central serous retinopathy, anemia, pre-diabetes, Osteopenia, cervical cancer cells, Haole Rot (a fungal infection on the skin), and the less serious side effects like weight gain, moon face, insomnia, headaches, dizziness, fatigue, social anxiety, and others. On top of Myasthenia Gravis, that can be overwhelming. Hell, by itself that’s overwhelming. Thankfully, my doctor and I agreed that I should give IVIG another shot so I could get off of prednisone, and it would likely take me a long time.
Although I began to taper in December 2016, here I am still on it in June 2020. Getting off Prednisone has, at times, been worse then the disease. You have to taper very slowly because the medication takes place of your natural cortisol. This signals your adrenals to slow down and stop producing it. You have to slowly wake up your adrenals so they can start producing cortisol again. Ever taper has been brutal for me and it’s been a roller coaster of tapering and increasing the past 4 and a half years. I know that with each taper, I’ll be dizzy, lightheaded, fatigued, with headaches and leg cramps. I’ll be anxious and unable to sleep. Not only that, but if I taper too much, Myasthenia Gravis flares as well which usually impacts my swallowing and breathing most. It’s been a slooooooow sloth pace progress but I’m finally below 10mg!
Low doses of Prednisone & getting my face back - 2020
I’m currently at 7.5mg every other day and decreasing. I’ve lost half of the weight and my face isn’t nearly as swollen. I’ve had bumps in the road where I had to increase again but I know I’ll be off this drug in no time. It’s important not to get discouraged when you’re trying to come off of Prednisone. If you’re currently on it, just know that the symptoms slowly fade when you’re tapering. They won’t last forever! Make sure to allow yourself a lot of grace and understanding while on it and while coming off of it. Never taper without a doctor’s advice or recommendation obviously though because it can be fatal. It’s not an easy drug so just remember to be patient with yourself and this too shall pass!
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