Cardiac sarcoidosis and muscle fatigue

Posted by tgood @tgood, Sep 8, 2023

In May, 2023, I was diagnosed with cardiac sarcoidosis which appears to be the cause for my heart failure in 2021 requiring the implantation of a pacemaker which was recently changed to a defibrillator. In May, I began taking prednisone, CellCept, and Atovaquone in addition to my heart failure meds. In the past three weeks I have begun to have muscle weakness which I notice most in my legs such that I cannot walk my normal three miles each day.
My rheumatologist at Mayo recommended PT which I’m pursuing but I’m wondering if others have experienced this and does it go away when you stop taking prednisone? I’ll complete my cycle in early December.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Sep 8, 2023

@tgood Welcome to Mayo Clinic Connect. Your disease is really a new one on me. I know that prednisone and CellCept can cause fatigue. I take both and have to rest often. Also, autoimmune disease case fatigue and it’s something you have to get used it. Five years after my diagnosis, I’m finally getting back to walking almost what I did before. Continue to work with PT and work on your walking. Just take it easy and don’t try to do everything as before. You’ve only been diagnosed for about 5-6 months.
Maybe you could talk to your doctors about the prednisone, also. Be sure to let me know what they say!

Colleen Young, Connect Director | @colleenyoung | Sep 22, 2023

Hi @tgood, I'm tagging other members like @estrada53 @craigz20, @suscros68 @okieorangeblood @rj4group who have experience with cardiac sarcoidosis and who may have some insights for you.

You may also be interested in these related discussions:
- Cardiac Sarcoidosis
https://connect.mayoclinic.org/discussion/cardiac-sarcoidosis/
- Sarcoidosis pain: Does anyone experience all over pain on their skin?
https://connect.mayoclinic.org/discussion/sarcoidosis-pain/
- Sarcoidosis Treatment: Tips for an effective path to better health
https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
Have you started PT? Is it helping?

tgood | @tgood | Sep 23, 2023

In reply to @colleenyoung "Hi @tgood, I'm tagging other members like @estrada53 @craigz20, @suscros68 @okieorangeblood @rj4group who have experience with..." + (show)

I have not yet begun PT but I expect to within the next couple of weeks. I also see my urologist/oncologist in two weeks and will likely begin ADT for prostate cancer which will also affect fatigue. That will make the need for PT more urgent.

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