Dealing with a Rare Eye Disease in the Midst of COVID-19

1. Dealing with a Rare Eye Disease in the Midst of COVID19 By The Doctor Weighs In

2. Introduction • I took a pass on keeping the regular follow-up visit with my retinal specialist in April. I said to myself (and anyone else who would listen), there’s no sense keeping the appointment for my rare eye disease because I was not going to accept the recommended treatment.

3. Immunosuppression is the treatment of choice for my rare eye disease • According to my specialist at Stanford, the next step in my care is big-time immunosuppression with IV methylprednisolone (a steroid) plus IV cyclophosphamide (a chemotherapeutic and immunosuppressive drug). This scared me.

4. Making a leap • By June, it looked like the pandemic was slowing down in Northern California. So when my next appointment popped up on my calendar, I decided I would go. This was a big leap for me as I only rarely left the house at that time. • Related Content:Why It’s Essential for Women to Care for Their EyesCases of Preventable Vision Loss Continue to Rise, But Why?Thyroid Eye Disease: Who’s at Risk and Who’s on Call

5. The COVID-19 precautions at Byers • The COVID-19 precautions at Byers seemed well thought out. They made everyone enter the building through a single entrance that was guarded by a man with hand-sanitizer and a box of masks.  We had to line up six feet apart and enter one-by-one.

6. Difficult choices after the bad news • By the time I got the bad news that my eye disease had indeed progressed, I was able to rationally think about my choices. We initially thought that the inflammation of my eye was due to taking alendronate (Fosamax) for osteoporosis. This is because the timing of me starting the drug and developing the disease was highly suggestive that it could have been the trigger.

7. There was one other option for my rare eye disease • But there was one other course of action that could be taken before subjecting myself to immunosuppression therapy, however. That was to take a sample of my vitreous (the jelly-like substance in front of the retina that gives the eye its shape) and analyze it for rare or unusual infectious organisms that are not currently known to cause a condition such as mine.

8. That’s where Aperiomics comes in • Aperiomics is a laboratory that specializes in identifying pathogens in various body fluids. They have developed a database of every known, sequenced bacteria, virus, fungus, and parasite in the world. • Then, using something called “deep shotgun metagenomic sequencing”, an advanced technology that can find even small amounts of genetic material in the sample. Using sophisticated algorithms, the sequences of that genetic material is then matched to the database. This can lead to the identification of the causal organism in many cases that had previously gone undiagnosed. • Other stories by the same author: COVID-19: The Impact of Our Early Failure to Respond

9. Surgery – the least bad choice • So, I opted for surgery, a procedure known as a diagnostic vitrectomy. Yes, they remove all or almost all of the vitreous.  The surgeon assured me, however, that the body would replace the missing gel with aqueous humor – the liquid in the front part of the eye. He said it wasn’t a risky surgery and, in fact, it only takes about a half-hour to perform.

10. My outpatient surgery experience • I was escorted into the outpatient surgery center and, once again, my husband was relegated to an outside waiting room. • Many different nurses worked on getting me ready for surgery. All were fully PPE’d up. • The nurse anesthetist explained that I was not going to be asleep for the operation. Rather, they were going to use drugs to put me into a twilight state.

11. After-effects: the air bubble • The morning after surgery, I noticed a big bubble with a black rim floating around in my eye. The vision was ok if I positioned my head in a way that allowed the bubble to float out of the field of vision. I also had a huge pupil because I was prescribed dilating drops.

12. And the results show? • Lab tests that had been sent to the Stanford lab started rolling in shortly after the surgery. Everything was negative. • Aperiomics, the outside lab, kept me in the loop on the status of processing my precious specimen. I thought it was a nice touch: • We got it • We’re running the tests • We are analyzing the results • And, finally, the results have been sent to your doctor.

13. So, what to do now for this pesky rare eye disease? • One of the choices, the dreaded combo of intravenous (IV) cyclophosphamide (a drug used as chemotherapy and to suppress the immune system) and IV methylprednisolone (a steroid) was still on the table. But this time, new options were offered:  • Triple therapy with azothioprine, cyclosporine, and prednisone • Flucloronide implant into the left eye

14. So, did I make the right decision? • So far, so good.  • As you know, in the months after my surgery, the COVID virus went wild again scaring the bejesus out of folks like me worried about having a high risk of a bad outcome. So not being on immunosuppressants right now seems like a good thing. My doctor, however, assured me that other patients are taking those drugs right now and doing just fine.

15. The bottom line for me and my rare eye disease • The bottom line for me is that I was able to actively participate in the decision-making for my eyes. Obviously, I am not a chorioretinitis specialist but I have one of those after all. • I am, however, a specialist in myself. I knew that I had to do everything possible to avoid immunosuppression in the age of COVID. If I end up having to get the dreaded drugs now, at least I know that I did everything within my power to avoid it when I felt it was too big a risk for me.

16. Get in Touch Contact Us The Doctor Weighs In Author: Patricia Salber Click Here To Read The Full Article: https://thedoctorweighsin.com/chorioretinitis-rare-eye-disease/ Website:https://thedoctorweighsin.com/ Email:info@thedoctorweighsin.com

17. Thank You