[leslie-sternlieb]

This is my first post. I have been experiencing salivary issues for the past eight months and wonder if it’s Trikafta or CF related. I began taking Trikafta in December 2019 and am one of the fortunate ones whose lung and GI functions have greatly improved, with seemingly no side effects. Then, in August 2020, my ability to taste food changed—I started to have a metallic taste that was most apparent with bland foods like bread, rice, and scrambled eggs. (To my knowledge I never had COVID.) It began a couple of days after taking oral Neomycin and Xithraxin for possible SIBO. The doctors ruled out those antibiotics as a cause for metallic taste. I took a blood test for Sjogren’s (negative) as well as bloodwork that ruled out heavy metals. I had my first sinus surgery in December 2021, and after a few days I developed tingling and numbness in my left lower leg and foot, and left hand. The tingling sometimes affected spots around my body and head, but after a while settled mostly around my left lower leg and hand. It comes and goes, but worsen when I take a warm bath. I was evaluated by a neurologist in March 2022, who attributed it to my (temporary) rise in blood sugar after a few days on Prednisone after my sinus surgery, and days any nerve damage should heal after a smile. (My A1C has never risen above 6.8 and is now 6.5; diabetic neuropathy was ruled out by my podiatrist.) I visited an oral pathologist who said my saliva was “ropey,” and it may have been possible that I was producing more mucus than serous saliva, which could affect my taste. Is more mucus (vs serous) saliva a CF thing?  I also had an upper endoscopy and BRAVO to check out acid reflux. I have some evidence of that, but it’s mild. Acid reducers don’t seem to help with the metallic taste, either. I’ve seen several specialists and had several diagnostic procedures. Anyone else here reporting a change in taste? Ropey saliva? I think the tingling might be a rare Trikafta side-effect, from what I read in this thread. (Though my tingling didn’t begin until two years after beginning Trikafta.) All of this is new, and I’m at wit’s end. Any help is greatly appreciated.

[leslie-sternlieb]

I’ve been experiencing this change in taste since August 2021, so even if I did have a mild case of COVID (unlikely, as I barely leave my house except for the occasional medical or dental appointments), it should have cleared by now, in April 2022. In fact, it’s changed somewhat, though still metallic. Only strong or spicy foods escape that taste. Sometimes I develop canker-like sores along my lower lip, esp where the lip meets the gum in the middle. But there is a pronounced feeling of bumps in the lower lip, which slightly alters but has been present for a year. Began Trikafta on Dec 2019. The tingling actually began with prednisone therapy a few days after sinus surgery last December, and now comes and goes. Seems a bit late for Trikafta to be at fault for all my symptoms. My CF doc doesn’t know what to make it any of it. Nor does the oral pathologist.