Hi Helen,
Yes I have a very dry mouth too owing to extensive deposits in my salivary glands. Many years ago, Dr Lachman at the NAC told me that almost everyone with AL Amyloidosis has amyloid in their salivary glands without realising it. Mine could be clearly seen on a PET scan I had in 2013. When "milked", the salivary glands under my tongue produce no saliva at all and the others very little. Chemotherapy can also cause dry mouth. Some people recover from that others never do, according to my Haematologist. The lack of saliva heightens my other mouth symtoms which are far, far worse than the dry mouth........nerve damage to the palate nerves causing chronic hypersensitivity which is extremely incapacitating. I have a relentlessly ferocious salty taste coming from my hard palate. It invades my whole mouth and is worsened by talking, eating and most activities. I have had this condition since 2003 and so far have not found any symptom relief. Whilst chemo was successful in lowering my Free Light chains, there has been no regression of the amyloid deposits as they do not regres from soft tissue. Only Dr Wechalekar at the NAC has been interested enough to try and help find me some symptom relief but no success so far. Another NAC consultant told me my mouth symptoms are unprecendented? My quality of life is very poor. For the dryness, I find sucking sugar free sweets or gum helps to stimulate saliva. I use Ricola Cranberry sweets and buy them in bulk on-line. I cannot suck them all day tho' but they are essential if I have to talk. I have to take drugs to enable me to sleep at night tho' I wake up several times a night with the ferocious symptoms. A mouth rinse of Biotene Moisturising mouthwash helps and enables me to get back to sleep again. Unfortunately the mouthwash does not help during the day. I have read that Biotene gel and spray can help some people with a dry mouth but they do not help me. You can buy all these products on-line. I think they are not available otherwise in the UK. I also avoid sugar in both food and drink. I have strong teeth fortunately, but since my dry mouth started, I constantly have to have fillings because saliva naturally protects the teeth from decay. My dentist ihas been very helpful in suggesting Colgate Duraphat toothpaste as the best decay preventative toothpaste. It is available on prescription. It is also helpful to use a single tufted toothbrush to brush the insides of the teeth after brushing with a Philips Sonicare electric toothbrush. Also recommended by my dentist. Additionally, I use thre different widths of interdental brushes.....they are colour coded and your dentist/hygienist can advise. I floss manually twice each day and once with the Philips Air Flosser. Hope this helps. So desperate for the NAC/GSK new anti-amyloid drug which promises to destroy up to 90% of deposits. Would love to know when phase 11 is expected to open, especially after the recent announcements from the US about the Prothena drug going into phase 111 and also the expansion of phases 1 and 11 into Europe. Good Luck, Helen, Pat.
