As always, this is not medical advice and you should consult your doctor before making any changes to your diet, supplements or medications. NEVER stop taking prednisone abruptly or without discussing it with your doctor.
Three years ago my life forever changed when I was diagnosed with a rare autoimmune disease that was attacking my liver. In fact, a month after my daughter turned one and an hour after my grandmother died, I was rushed to the hospital for an emergency biopsy because my liver enzyme levels that should be under 50 were in the 3,000’s. I was already jaundice and my liver was shutting down. The diagnosis was shocking and heartbreaking and would change everything for me and my family. The next three years would be a rollercoaster none of us were prepared for. My life would be saved but my health would deteriorate all thanks to one drug, prednisone.
Wikipedia says prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases, some autoimmune diseases, and some types of cancer, but it has significant adverse effects.
Significant adverse effects.
Hmmm, interesting, no one told me that. In fact, no one told me to expect anything. The night after my biopsy, I got a call from my doctor with a diagnosis and a prescription for 60 milligrams of daily prednisone. She told me that if it worked, I wouldn’t need a liver transplant. I had to abruptly stop breastfeeding and pray for a miracle. On a side note, that night after bawling through my last nursing session with my daughter, I stayed up all night pacing through bedrest orders and writing my grandmother’s eulogy. The drugs worked almost instantly and my coloring and enzyme levels began to improve. Prednisone saved my life. No transplant list.
Significant adverse effects.
I wasn’t going to die, now what. Those significant adverse effects no one told me about would steal my quality of life, test my marriage and make mothering the hardest job on earth. The first few months I didn’t sleep, I had energy like I was on diet pills. It was awesome. Honestly, my disease makes you extremely tired so the extra energy was pretty exciting for me. I started my blog, wrote constantly, cleaned the house, took care of the people, did all the things and was okay or so I thought. The only side effect I had for months was the mood swings. The understatement of the year was that I had moments of severe anger and sadness, almost constantly. I told The Water Man more than once through tears that I wasn’t suicidal but I did think the kids would be better off without me and that he deserved more than this. The truth I didn’t know then but I know now is that I deserved more too.
I deserved in the very least for doctors to tell me the truth about high doses and long-term prednisone use. I deserved to know that I wasn’t crazy or depressed and someone should have told me that it wasn’t me or my fault. The craziness was the drugs. Thanks to the prednisone, I would go on to develop a tachycardia and atrial fibrillation, endure two heart ablations, chronic sinus infections, candida, severe joint pain, devastating brain fog and confusion, daily exhaustion (spoonies know what I’m talking about), moon face, body shape changes and substantial weight gain. Significant adverse effects. And no one told me. Wikipedia in three words gave me more warnings than any of the dozens of doctors I saw.
I deserved more and you do too. After talking with so many people on prednisone, I discovered that it isn’t uncommon for doctors not to warn you about the dangers. I don’t want to scare you, but if you are informed, you can make informed decisions, seek out more information, find supportive doctors and know that it is not you. These are the real-life significant adverse effects your doctor does not tell you about.
Prednisone Will Jack Up Your Gut
Hippocrates, the father of modern medicine, said that all disease begins in the gut. After my functional medicine doctor saved my life, I am a solid believer in this idea. I know the conditions of my gut lead to chronic inflammation in my body which made for the perfect environment for autoimmune diseases. However, prednisone will jack up the healthiest gut. Prednisone will break down the gut barrier allowing toxins and bacteria into your bloodstream (leaky gut) and kill all your good bacteria.
You can suffer from constipation, cramps, diarrhea, stomach ulcers, stomach pain and discomfort, gas and food sensitivities. Working with a natural doctor to counteract these nasty effects on your gut with prebiotics, probiotics and digestive enzymes is vital to maintaining your gut health and overall health. Don’t allow prednisone to destroy your gut, be proactive about protecting it.
Prednisone Will Cause Candida Overgrowth
Speaking of your gut, there is nothing worse for your gut and your entire body than an overgrowth of candida. I had no idea that I was suffering from candida overgrowth, it took two years of stomach issues, severe brain fog, and chronic sinus infections before I realized what was happening. Candida is a natural bacteria that is a yeast found in your intestines and your mouth that if it grows out of control because of antibiotic use, prednisone or an unbalanced gut flora can turn into a fungal infection throughout your body.
Even after I weaned off prednisone, my candida overgrowth was so bad that I was still suffering from exhaustion, brain fog, joint pain, yeast infections and being sick all of the time. I finally rebalanced my gut flora, killed the overgrowth and took back my health with a plan from my doctor with diet and supplements.
Prednisone and the candida aftermath put me in what I can only describe as an awake coma. Truly, I was confused most the time, too tired to think clearly and felt trapped within my own mind for nearly two years. I had no idea how bad it was until I “woke up” last summer. Do not underestimate how serious candida overgrowth can be and trust your instincts when the people around you and your western medicine doctors laugh at the idea of candida overgrowth. Western medicine has a long way to go in terms of natural healing.
Prednisone Will Hijack Your Emotions
I have never felt more out of control of my emotions than on prednisone. If being diagnosed with a lifelong disease isn’t bad enough, I felt helpless to my emotions. The thoughts that went through my mind some days scared me. I have never felt so badly about myself. I had no patience and couldn’t handle anything. Mothering while trying to mask extreme anger made me hate myself. Some days the sadness was so bad, I had to focus every moment to hold back tears until bedtime then cry the rest of the night. Other days, I couldn’t hold back and I walked through my days with tears streaming down my face. I told my children I was crying because my stomach hurt and my son started to pray for my stomach pains.
I didn’t recognize myself. Not just physically because of the weight gain and moon face, swollen neck and abdomen but my personality had changed completely. Every night I lay awake worried my children would never know me because prednisone had turned me into someone I didn’t know, someone I hated and feared they would one day hate as well. I was so thankful that my husband had known me before and also because I won the lottery with a man who God blinded with love who loves me unconditionally. When I was screaming, crying, fighting, drowning, The Water Man loved me anyway. I know how rare our love is but I also know how easily prednisone can destroy you, your marriage and your family because as strong as we are, somedays I was holding on by a thread.
Get help, talk to someone, don’t underestimate the impact the drug can have on your mental health and most importantly, know that it is not who you are. Please know that this is not your fault and it will get better. Short-term prednisone use and maintenance (low) doses do not usually cause severe mood swings and your symptoms will improve as you drop your dose and when you get off the drugs.
Prednisone Can Lead to More Health Issues
Well then, now that were all crying, at least I am, let me give you a little more bad news before the good news. But hang in there, the good news is coming. Prednisone can lead to further health issues. Besides your gut, candida overgrowth, physical changes, weight gain, mental stability and other disturbing side effects, prednisone can cause more serious issues like bone loss, heart arrhythmias and increased blood glucose that can lead to diabetes. No one told me that either.
Well, that’s not true, my endocrinologist warned me about the bone loss, tested my bone density and started me on a calcium and vitamin D regiment that probably is the reason I don’t have any significant bone loss. But the doctors who prescribed the prednisone never mentioned any of that. My cardiologist and echocardiologist confirmed the heart arrhythmias were due to the pred and my glucose levels did increase.
The best way to counteract these risks are working closely with a doctor that takes the corticosteroid dangers seriously. Calcium can save your bones, keep caffeine to a minimum (I know, I know, but better than a heart condition, I promise you) and keep your sugar and carb intake low. I am not a doctor, this is not medical advice and you should always consult with your doctor. I just want you to know there are things you can to do prevent more problems and protect yourself.
There is Life After Prednisone
Friends, don’t lose hope. It was so hard for me to read about the side effect of prednisone, especially in the beginning because like many of you, I had no other options. I had to take the drug and I am thankful for it because prednisone did save my life. I am able to help others today, enjoy my husband and mother my babies because of prednisone. For most people, prednisone is a temporary solution. Even if that temporary time frame is much longer than you’d like, in the grand scheme of things, even for me, two years is temporary.
I have learned so much about myself, my marriage and my health thanks to my experiences over the last 3 years. I have changed how I care for myself and my family entirely. I have reorganized my priorities and know what and who is most important. My health, our family’s wellbeing and keeping our stress low takes precedence over everything.
Your struggles, your experiences and your story can be used for good. Know that. And know that although there is a nasty side to the drugs you are on, there is also, always a light at the end of the tunnel. There are doctors who listen, doctors who will work to improve your quality of life and there is life on the other side of this.
This is an emotional post for me, more than I realized it would be, as is sharing these photos. I knew one day I would share this picture when I was ready. Being on the other side, still dealing with a chronic illness but thriving, I wanted to share where I’ve been. The picture on the left is two weeks after my diagnosis and on high doses of prednisone. The picture on the right is a year later at my daughter’s second birthday party still on prednisone.
I will never forget how I felt on both of these days. On the left I was still terrified, worried what this diagnosis meant for me, wondering if I would be alive for my daughter’s next birthday. And on the right, I sat in my room crying for an hour before the party, trying to pull myself together to host a house full of people when I didn’t want to be seen by anyone.
I share this post and these pictures for you. You who are living in fear, terrified of what your health will bring, suffering through extreme side effects and hiding from life. You are not alone. You are more than the illness or the drugs and you deserve better.