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Prednisone: A Friend and a Foe

My Experiments with Prednisone.

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In the very beginning, when my symptoms were at their worst, with severe chest congestion, coughing, and extreme fatigue, Prednisone offered me great relief. But, as some of you may know, Prednisone is an immunosuppressant and prolonged use of it comes with a price. My story is as much a success story of finding a means of relief as it is a cautionary tale against excessive use of Prednisone.


Ever Changing Symptoms

In the years that I’ve had Sjogren’s, my symptoms have evolved somewhat and it is a never-ending journey to come up with new ways to cope with symptoms. In the earlier years, my symptoms included chest congestion, shortness of breath, and extreme fatigue. When I first experimented with Prednisone (under the guidance of a rheumatologist), I took about 20mg of Predisone per day, which would significantly reduce my symptoms, especially congestion, within a day or so. From there, I would simply taper my dosage until it reached 0mg. Along with the congestion and fatigue, I also suffered from occasional abdominal pain with burning sensation. The pain would become so severe that I couldn’t sleep, fainted once, and was even hospitalized once. I was initially diagnosed with heartburn and acid reflux, but no amount of Nexium, Zantac, or Tums helped with the symptoms. Eventually, I suspected that the burning sensation may be connected to my autoimmune response and tried taking 20mg of Predisone. Again, the pain went away fairly quickly after I took the Prednisone. It seemed like a god sent—finally, a solution to my problems!


Over time, my symptoms shifted to headaches, brain fog, and pain/burning sensations throughout my extremities. I was working in a high-stress environment, where I needed to be able to focus. The brain fog presented a huge problem for me, to the point that I would have to take sick days if I could not concentrate or think. It was very difficult because my flares could last weeks at a time and I did not have that many sick days. I was also worried about disclosing a chronic condition to my employer and the potential repercussions of that. So, I resorted to taking Prednisone. However, 20mg of Prednisone no longer offered me relief; I usually felt Prednisone's effects fairly quickly, within a few hours. I would have to increase the dosage to 40mg, then 60mg, in order for there to be any noticeable effect.

Waning Efficacy of Prednisone


Once the dosage went above 60mg per day, it could take up to a month for me to taper down to 0mg (and sometimes, if I tapered too quickly, the flare would come back). For a few years, I would be on Prednisone a few times a year for up to a month at a time. Although I didn’t know this at the time, I think prolonged use of Prednisone wore down my immune system—made me more susceptible to viruses (e.g. flus, colds, UTIs), led to an overgrowth of Candida in my system, and wreaked havoc on my digestive system.


Now, I try to avoid taking Prednisone as much as possible, although at times, the pain can become quite unbearable and I do relent. To this day, Prednisone still helps with my stomach pain (if acid blockers did not) and helps somewhat with fatigue. But, I try not to take more than 20mg of Prednisone a day.


Recently, I have begun experimenting with CBD products as a potential alternative to alleviate pain and fatigue during my flares. I’ve been using both the edible CBD oil and a CBD ointment. I am still in the first few months of trying out CBD products, but will post an update once I have spent more time with the products.

What medication or products have you used to cope with flares? Please share your experiences in comments or through the home page submission.


Comments


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Hi, thanks for stopping by!

I set up this website to share some of my own experiences dealing with Sjogren’s, from difficulties in obtaining a diagnosis to ongoing struggles to manage my symptoms.  It is my hope that through sharing my experiences, I can help others in various stages of living with Sjogren’s.  More than that, I hope this website will become a resource where anyone struggling with Sjogren’s can share his or her experiences and learn from those of others.

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