First, let me say that I am not anti-steroid...I know that many of us need to take them in order to live (me), in order to move, and finally in order to keep our various diseases under control. That said, I often wonder if we could warn more people with autoimmune diseases away from steroids as long as possible if it wouldn't be a lot better for them in the long run.
I have a long love/hate relationship with prednisone, hydrocortisone, solumedrol, methylprednisolone and Kenalog. At one point or another during my life I have used any one and sometimes more than one to keep myself moving. I knew the basic side effects, weight gain, hair loss, crabbiness but the more extreme side effects were not mentioned to me at all during treatment.
This is my story of how steroid use went south on me. I don't tell you this story to scare you, but to let you know how serious steroid use is. To let you know how important it is to wean carefully off steroids, and when you have an infection to go to the doctor to care for it. As you will see, steroid use is nothing to be casual about.
It started with a sore shoulder. Shoulder's are difficult because you can never tell if it's the shoulder or the neck or elbow on my body and that's how the trouble started. My Rheum injected my shoulder with Kenalog, the minute he put the needle in, I knew he had missed the spot. Unfortunately, I was right. At the time, he told me that he thought it was my neck that was the problem and I should see my Pain doctor. I went to my Pain doctor and told him what had happened and he agreed to do an injection in my neck, steroids of course. I had both of these injections within 2 weeks of one another.
At that point my shoulder was still in excruciating pain and I ended up at my orthopedic surgeon, where I should have started to begin with. He then decided that I needed two cortisone injections in different areas in my shoulder.
Ok, so you're thinking are you nuts? Yes, now that I look back on it, I think I was. The pain was so tremendous that I would have let them stick me 14 times if I thought it would have made the pain stop. Every doctor that I went to knew about the steroid injections before and they also knew my history of having 12 to 15 a year. I will say my surgeon warned me of excessive steroid use but he never told me exactly what could happen if I had too many steroid injections. In fact, I thought that steroid injections were different because I wasn't taking them every day.
So I had both injections two weeks apart. If you are counting that is 4 cortisone injections in 8 weeks. A week later I was walking around my house telling my husband that I was surprised you could actually feel this awful and not die, that was because I was in shock from Adrenal Insufficiency. I didn't believe that I was in bad enough shape to actually need to go to the ER until a nurse told me that I should go get checked out. That ER visit ended in a 5 day hospital stay and a diagnosis of Adrenal Crisis and Adrenal Insufficiency. It also required an ambulance trip back to the hospital after I was discharged and a change in medication.
All said and done, my adrenal glands stopped working, they figured since they were getting a steady dose of steroids that they didn't need to do their job anymore. A normal person in the ER in a stressful situation would have a cortisol level around 30, my cortisol level was 0 when I went to the ER. You need cortisol to sustain life, if not, you go into shock and can easily die. What did this new diagnosis mean for me? Two new steroid drugs every day, possibly for the rest of my life. Thankfully, I'm down to just one now, hydrocortisone.
I have tried weaning but when I get to about 10mg, my body just quits on me. I stop sleeping, I get bad headaches, my blood pressure gets very low and I feel like I'm going to pass out. I will most likely deal with this for the rest of my life and as we all know, long term steroid use comes with a lot of very bad side effects.
I often wonder if I had been told about Adrenal Insufficiency, Cushing's Syndrome/Disease or even the chance of PCP Pneumonia if I would have heeded the information and treated steroids with the respect they deserve. I'm finding that even doctors aren't aware of the true reality of these drugs. This is why I'm writing this post, if you are on steroids, please be aware of what you are dealing with. If you wean your steroids, please let your doctor know so they can keep a watch on you and make sure that you do it in a healthy way. If you aren't on steroids, hold off as long as you can. They may seem like a miracle but they come with an extreme price tag which might just be your life.
Please, help me spread the news...not to scare people but to help patients make an educated decision before they start a treatment they might not have chosen had they known the consequences beforehand.
I have been on steroids for two years now, they keep me alive. It's not how I would chose to live, I have the weight gain, hair loss, crabbiness and brittle bones. Not only that, it makes it difficult to have dental work done and outpatient surgery is no longer an option, every surgery I have requires an in patient stay so they can stress dose me after surgery so I don't slip into Adrenal Crisis.
I'm thankful for my awesome doctors who knew right away in the ER what was going on. If they hadn't caught it quickly or sent me home not knowing what was wrong, I probably would have died. I'm thankful for an awesome Endocrinologist who reminds me constantly this is not a disease to play around with, and takes no garbage from me about procedures or other things I might want to do that are not possible because of Adrenal Insufficiency. Most of all, I'm thankful that even with this very dangerous disease I live with, because of the steroids I get to live.
And yet, if I could go back and make that one decision again...I would have skipped the steroids...