Hello. I haven't posted here before but I have come to value the information shared here and want to contribute. I was finally diagnosed with lupus SLE in August 2017. I have secondary Sjogren's syndrome. My symptoms have been occurring for around 20 years, after pregnancy, with flares every few years. I even remember, in desperation, asking my GP about 10 years ago if I could have lupus, only to be dismissed and made to feel a little foolish. My symptoms are mostly relatively mild thankfully except for my eyes which are severely affected. For years the eye clinic at my local hospital had been mystified and asking ME why my eyes are so dry!!
I started with the usual lubricating drops. Then had 2 punctal plugs fitted. Then later the remaining 2 so all four ducts are now sealed. Sometimes I knock out a plug accidentally and it has to be replaced. For a long time this made a huge difference but then dryness crept back until it became intolerable. I was prescribed iKervis. The eye drops are inserted last thing at night. But it hurt like crazy for up to half an hour. I persevered for a week then couldn't take it any longer. My rheumatologist was sympathetic and prescribed pilocarpine tablets instead. They were effective but I struggled with the shivers and sweats as a side effect. Eventually I agreed with the eye clinic corneal consultant that I'd give the iKervis another go. I'd read that if I could break through the worst few days that the side effects would ease and settle.
After about 8 or 9 days there was barely any stinging. Beyond that it got even better. I still have four punctual plugs as well. My eyes are the best they've felt in a decade! They are actually occasionally watering! The dry grittiness is gone and there's no sticky stringy muck. The consultant is delighted. He said he only wishes more of his patients would persevere.
So, that's really why I'm writing now. To try and encourage anyone facing similar symptoms and with this prescription to hang in there and trust that you will break through the initial reactions. Good luck. Happy new year to you all.