Shingles(disseminated in particular)

Hello. I’m 44F and I have AI disease. I’ve been having shingles for about the past year and I haven’t even started immunosuppressants yet. Has this happened to anyone else? I thought it was concerning to get shingles after you started immunosuppressants. The doctor I’ve seen about it thinks once my immune system is modulated it will actually help stop the shingles. I’m so confused and my body is not fighting it off anymore even with antivirals. I’m not looking for medical advice. I’ve seen all the medical people, they just don’t seem to be very concerned. I however, bedridden, am very concerned. Has this happened to anyone?