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At the very beginning I was like that. I could eat. Everything tasted terrible. I went from 153 lbs to 99. It all got better. I’m up to 125 which is good for me. Everything still tastes a little off. Some days are better than others. The only consistent thing is that chocolate tastes like crap! So sad 😿
The Amyloidosis Team described in some detail the symptoms, however just a nasty metallic taste with a white coating and the odd sore that comes and goes then "Geographic Tongue" is just a possibility. See your dentist or GP and it will be gone in weeks. If it's an amyloid problem, then join the club! From experience, I can say that Vyndaqel has slowly been effective in returning my taste buds to almost normal.
At first, when I was on all 5 chemo drugs plus Dexamethasone, it was awful. Everything tasted bitter and my mouth was dry. When I was taken off everything except the Darzalex, it went away. I’m not sure which med caused it, but I completely understand. Biotene mouth rinse helps a bit, but doesn’t last long.😩
Yes, taste changes are a common symptom when amyloidosis affects the tongue and mouth. This often occurs alongside other oral symptoms like tongue enlargement (macroglossia) and the development of spots or blisters on the tongue.
Some key symptoms that can affect taste include
• Tongue enlargement making it difficult to Show Full Answer
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