Comment by prirun
2 years ago
I have shingles in my left eye, since 2017. It didn't go away because after after a year or 2 of dealing with it, a doctor suggested I get my immune system checked. Turns out my immune system is for shit (IgG levels got down to 80; they are supposed to be 600-1500). They don't know the cause.
If you had shingles at 13, you must have had chicken pox before that, because that's how it works: you get CP first, it lies dormant in your nerve ganglia, then comes out as shingles when you are stressed or your immune system is weak.
Since you said you were vaccinated against measles but still caught them, it sounds like you might have an immune system issue like me. My body doesn't make antibodies, so I have to take weekly infusions of human IgG. IgA and IgM are also not working, but those apparently aren't as important. And I don't think there is any treatment to supplement them anyway.
Suggest you get an IgG, IgA and IgM blood test. If your levels are really low, you could be a walking time bomb like me. I was lucky and never got really sick, but while I was at Mayo, the levels were so low (80), they sort of freaked out and didn't want to let me leave without taking an infusion.
Have you been taking valacyclovir?
I started acyclovir a couple of days after shingles broke out, in 2017. It calmed down after a couple of weeks, so they knocked it down from 5 pills a day to a maintenance dose. A couple of weeks later, it flared back up. This went on for several months.
I switched to valacyclovir, mainly because I only had to take it 2x a day instead of 5. Told my doctor (ophthalmologist) I think I needed it 3x/day, and instead of doing that, he lowered it to once/day. A week later, it flared back up, and he did put me on 3x/day. I found out 3 years later when I went to Mayo that 3x/day is the standard dosage for an active herpes infection. For the first couple of years, I didn't know my immune system was broken, and it took over a year to figure that out (because of a prostate infection I shouldn't have had at my age, that required 2 rounds of antibiotics - also unusual).
I was on valacyclovir for about 4 years, but went off gradually myself because I couldn't tell that it was helping me much. I switched doctors because of insurance, and the new one basically lets me guide my medicine dosage myself based on symptoms because of all the problems in the first few years.
If anyone does get shingles in their eye and starts using steroid eyedrops, make sure your doctor also puts you on an eye pressure drop. Mine didn't, because he said he "didn't get concerned until eye pressures got above 25". I was on huge steroid doses, like 8 drops/day, for many months without an eye pressure drop and it caused severe optic nerve compression. The guys at Mayo said it's standard practice to use an eye pressure drop (brimonodine) whenever a steroid is used, and that eye pressures should always stay between 11 and 14 to avoid that.
Doctors don't always know what they're doing...