Age 58. Lives 50 miles outside of Chicago, USA. First symptoms noticed in early 2020. Sarcoidosis in the heart and in muscles and tendons behind the eye.

At the beginning of the COVID shutdown I really noticed my heart didn’t always beat according to my activity. Sometimes I would be sitting in a chair and could feel it speeding up. Or doing the dishes it felt like it was skipping beats. I would wake up in the middle of the night and my heart felt like I was in the middle of running a race. I didn’t know if it was because I had more time to notice what was happening with my heart. I mentioned it to the doctor who thought nothing of it. She ordered a sleep study. I got a cpap and figured all was good. Nothing changed. I had an ekg and a stress test. Doctor thought maybe it was just hormones. I was in my mid 50s at the time. I ordered a cortisol test and the results were a night time high cortisol level. Which could be causing a rapid heart beat. I tried to treat the high cortisol with supplements. No heart problems in my family and I am pretty healthy.

Then I had a pink goopy eye. Went to a walk-in clinic. They prescribed allergy drops. It still continued. I went to an ophthalmologist. He said it was blepharitis and to wash it with baby shampoo. Then, I walked in to my optometrist. It was a week before Christmas. My eye was red and swollen and oozing. She prescribed some steroid drops and antibiotic drops. It cleared up in a day. But, it returned after I quit the drops. So I started them again, and then a couple weeks later again. It was also noted that one of my pupils was fixed.

Next was the eyelashes rubbing on the lens of my glasses. TIme for new frames is what I did. The eye doctor tried adjusting my frames so they didn’t rub. Why COULDN'T someone have thought WHY ARE THEY RUBBING NOW? Next was the drooping eyelid. Just one eye. Like an aging eye, but just one. When I lay down the eye would shut. When I would look up the eye would shut. When I saw myself in pictures the eye appeared to be sliding down my cheek. Time for a specialist.

One specialist passed me to another who passed me to another. Tons of blood work and an MRI showed swollen muscles and tendons behind the eye. No cancer. Praise the Lord. Doctor said let's treat with high dose steroids and see how it goes. I wanted more of a diagnosis so I went to Mayo for a biopsy of the tissue behind my eyeball. The biopsy showed sarcoidosis. I feel the biopsy also caused extensive swelling which made my vision so bad I could no longer drive. After the biopsy I was prescribed a pack of steroids. They didn't do much help at relieving the swelling that was extreme after the biopsy.

The doctor who performed the biopsy told me that sarcoidosis is found in the lungs in 95 percent of patients so she referred me to a pulmonologist. I said, oh, I need a cardiologist because that is where my symptoms are. And I was correct. I passed all the pulmonology tests, but a PET Scan showed it in my heart. The ophthalmologist said she couldn’t treat me and to come back in a year if the steroids for the heart didn’t take care of the double vision and the lack of full horizontal movement. It’s important to point out that the sarcoidosis was in the tissue behind my eye, not in the eyeball itself. It is common for people to get sarcoidosis in the eyeball, which must be treated urgently to avoid blindness.

I am currently being treated at Mayo and I am positive the treatment is way worse than any symptoms I have had over the years.

While waiting to get an appointment with the cardiologist I was prescribed steroids starting at 60 mg for a week, followed by 40 for a week, then 20, 25, 10 and 5. There was significant improvement but still not normal. After I started tapering down the swelling of the eye came back.

At this point I was wearing a filter (looked like wax paper) over one eyeglass lens to let light in and it blocked the vision so I didn’t see double and could walk and function (but not drive).

Finally got into the cardiologist. It was marketed as a Sarcoidosis Clinic, but there is no clinic. There is a cardiologist who probably has some patients with sarcoidosis.

He prescribed a standard treatment. He pulled the top sheet off a stack of copies. Nothing personal, same treatment for any heart patient with a diagnosis of sarcoidosis.

Among the many tests I had, one was to wear a holter monitor. In one period I had 6,888 PVCs, and while it feels out of the normal to experience that rhythm, it does not cause an alert with doctors. I did not need any device inserted, like a pacemaker.

The plan is to start on 30 mg of steroids and taper down, while starting 10 mg of methotrexate and increasing the dosage by 2.5 every two weeks until I reach 20 mg. At that time I would be completely off steroids. It is a 25 week process. I had a few glitches in that because my eye was so bad I was in danger of causing irreparable damage. The eye doctor convinced the heart doctor to start immediately on prednisone and not wait until I get all the required vaccines. (The eye doctor couldn’t take charge until the heart was cleared up.) I did get all the vaccines that were required, not because I believe in vaccines, but because I wouldn't receive treatment without them and was slowly losing eyesight. I had few reactions to the various injections, one was mild hives. The COVID one caused me to skip heart beats. I could feel it when I took my pulse on my wrist that it was skipping. I messaged the doctor about it. They told me it was PVCs. I know it wasn’t the same feeling as a PVC.

I have been on steroids and have fluctuated up and down on those depending on the swelling in my eye. I tried methotrexate but had tingling in my legs and face. So the doctor thought it was an allergic reaction and had me switch to Arava and I have been on it for a week. I still have tingling in my hands, shins and souls of my feet. I have an appointment in 6 weeks with a neurologist to see what is causing the tingling sensation. This is per the recommendation of the cardiologist.

I feel old and slow. I don’t sleep much, my body hurts. I asked what to do for the muscle cramps in my hands and feet (I’ve read it is from the steroids robbing nutrients from the bones), and he told me that methotrexate doesn’t have that side effect. I have learned more from Facebook support groups than from the specialist at the “Sarcoidosis Clinic at Mayo.” My treatment for this incurable disease is worse than the disease itself. Feeling defeated.