Prednisone Warrior Karen wrote me her story as an email to show how she found alternatives to prednisone. Her prednisone side effects caused complications such as hospitalization. Find out how she recovered and tapered off prednisone. This article is part of a series of stories of Prednisone Warriors sharing their experience with prednisone side effects.
Good morning Dr. Megan:
I realize you get lots of emails but I am hoping this might be helpful to some Prednisone Warriors. Sorry, it is so long but it covers 9 years.
My journey has been a long one. It started with pneumonia in 2012 after a fall and being laid up for several months with broken bones. After the pneumonia was “gone” my lungs started filling up with mucous but no one could find a cause. Was put on massive amounts of prednisone – starting with injections and IV’s.
Then pills starting at 80 mg a day and stepping down over 4 weeks to 0 mg. I would be fine for about 6 weeks and it would start all over again. Had to have a bronchoscopy and more Prednisone.
That was done for 6 cycles and the doctor warned if they had to do another bronchoscopy I would lose my ability to speak. All tests for what might be causing my problems came back negative. Went thru several specialists of doctors and everything was negative.
I was put on 10 mg Prednisone maintenance dose daily simply because doctors did not know what else to do. That was the magic number that worked. All this time no one told me how bad Prednisone could be – simply that I would need it forever.
Hospitalization July 2020
Fast forward to July 2020. I was hospitalized because I could not breathe. Lung capacity was down to 25% with excessive fluid retention around my lungs and heart. My heart was operating at 15%. I got a cardiologist and a pulmonologist immediately (both new ones I had never seen before the hospital trip).
Both doctors agreed that I should eliminate Prednisone because they felt it caused the fluid retention. I lost 15 pounds of water weight during the 5 days in the hospital. I immediately went on 800 mg of sodium daily diet along with drugs to help my heart and reduce fluid. The pulmonologist ran tests and researched every possible cause for the buildup in my lungs. The best he could figure was excessive eosinophils in my blood.
Alternative to Prednisone – Natural
This is when I found you on the internet and got your Nutranize Zone supplements. These started to help me feel better within the first two weeks but I continued on all my other drugs and diet.
Nucala to Avoid Prednisone as an Alternative
Pulmonologist in November 2020 started me on monthly Nucala injections. I was very hesitant to replace a drug with a drug but it was either do that or be forced to stay on Prednisone the rest of my life.
Strategy for Tapering off Prednisone
The pulmonologist worked with me and in January 2021 (after the 3rd injection) we started to reduce the Prednisone from 10 to 9 mg. That went fairly well so about every 3 weeks I went down 1 mg until I was down to 5 mg daily.
Then I tried 4 mg and had to change to alternating between 5 and 4 for a week and then down to 4. Had to do the alternating again from 4 to 3 and then3 for a week. Then 3 to 2 alternating daily until I was down to 2.
I tried 1 and had to go back to 2 for another 10 days and then try again. Finally got down to one and the last step to 0 was the hardest. It took me skipping a day and then after a few days skipping 2 days. Then skip 3 days and then finally taking none. The process took until September 7, 2021 to accomplish.
During the time reducing the Prednisone, my joints have starting hurting and are stiff. Just old age or what I do not know. Or another Prednisone side effect?? I am 74 and still a Prednisone Warrior.
Recovery and Lessons Learned from Taking Prednisone
I want to thank you so much for your inspiration and help. Although I did not go totally crazy on Prednisone I believe it did cause some major medical issues that maybe are not discussed enough. Fluid retention in your body can cause catastrophic problems with your heart and lungs. I am still trying to lose the extra 20 pounds of body fat. I have made progress in my health and I am back taking care of my garden and my horses.
My heart function is back to totally “normal” and my cardiologist is rather shocked. Another doctor had wanted to put in a defibrillator!!
My lungs are back to an acceptable capacity.
I ache but not so bad I cannot do things.
I am not a spokesman for Nucala but it did help me. I do now realize there can be other alternatives to Prednisone depending on your situation.
I am grateful to you Dr. Megan for all the information you provide us Prednisone Warriors. Now if I could get just off the 800 mg sodium limit it would be easier but I am not complaining.
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