@diegory

My 50# weight gain was probably within the first 5 years of starting Prednisone for PMR. I was still reasonably active during this time. I complained of "exercise intolerance" within a year but that was because of being short of breath while doing 50 mile bicycle rides. I had an exercise tolerance test done and it was interpreted as "normal." My PCP wanted me to have a pulmonary function test but I declined that test since my exercise tolerance was normal.

I continued to gain weight while exercising until I hit the proverbial wall while doing one of my bicycle rides. I informed my PCP about an irregular pulse and "skipped beats" which warranted an EKG.

The EKG detected left ventricular hypertrophy (LVH). My blood pressure was normal at the time of the EKG but my PCP wanted me to check it more often. Within a week, I was in the emergency room with a blood pressure reading of 210/110. I started 3 medications to control my blood pressure.

Five years after I started prednisone, I was unable to exercise because of being chronically short of breath. I didn't think I was more short of breath when someone urged me to go to the urgent care center because I didn't look well. I was perturbed when an ambulance was called to take me to the emergency room. I would have run away but that was impossible with multiple and bilateral pulmonary embolisms. This pulmonary event was described as "massive." I didn't suspect prednisone until the intensive care doctors were outside my room speculated about what caused such a massive and "unprovoked" event. There was a lot of whispering but I heard the word "prednisone" being mentioned frequently,

I just looked at the time frame of my weight gain. I started prednisone daily for PMR in 2009. My weight increased by 40# within the first 3 years. All the cardiovascular issues were within the first 5 years. My increased weight peaked at 50# and stabilized. I told a doctor once that I didn't think it was humanly possible to gain that much weight even when I said that I stopped eating. I exaggerated but it was generally true because I made a conscious effort to not eat when I was gained so much weight.

My comorbidity list increased every year I was on Prednisone. Since getting off prednisone 5 years ago, I have lost 30 pounds. All my blood pressure medications were discontinued gradually after prednisone was discontinued along with about 5 other medication that were either treating a prednisone side effect or were prescribed to prevent a prednisone side effect.

I now try to aquacise as much as I can but a bicycle ride like I used to do is out of the question. I have rode a bike around a few blocks in my neighborhood. I was elated when I discovered that I could still swim a few laps without stopping in the big swimming pool and without having the fear of drowning.

I encountered many problems when I tried to taper off prednisone. Ultimately I was referred to an endocrinologist who determined that I had adrenal insufficiency and metabolic syndrome from long term prednisone use. I was told that it would take a long time to reverse these problems and some things might be irreversible. I'm still seeing an endocrinologist almost as often as my rheumatologist.

I took my last dose of prednisone about 5 years ago after a biologic was tried. It still took me 2 years after the biologic was started before I could taper off Prednisone completely. My comorbidity list has seen steady improvement since discontinuing prednisone except now I might have neuroendocrine tumor. This type of cancer is slow growing, unconfirmed and I'm asymptomatic. I'm worried they might have to stop the biologic I'm on.