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.
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...