Alendronic Acid not necessary.

[mavisesson]

There are many foods that I will not eat now because it is a problem with actual chewing some things th continued and is still grown and I am no 78 years. My mouth is very swollen, sore and bleeding whenever I try to clean my teeth. There is no cure for my situation except check ups with my dentist and the dental hospital. I have been told that the alendronic acid is probably what caused the over growth of the lower jaw.

I have stopped eating certain food because they are a problem particularly when out for a meal.

Th excessive bone on one side broke away from the original jawbone on one side and left raw bleeding flesh that lasted several days until the skin began to feel

I am keeping my fingers crosse that the excessive bone will eventually brak of but at this rate it will take until I am about 85 years.

There was no real reason for this alendronic acid medication except on the grounds of age. I

When this problem started and I discovered what caused it I decided to eliminate all medication unless i was about to die I stopped statins. and Indapamide. My blood pressure is only very slightly raised and I do nor eat fatty foods. Only when necessary I use olive oil.

I feel just fine with my basic health and my bones are in excellent condition. My exercise is working in my very large garden more of less on a daily basis.

[betty1943]

What is your original problem. Do you have PMR or GCA?

[Celtic PMRGCAuk volunteer]

Mavis, I'm so sorry to hear of the horrid side effect you are experiencing as a result of taking Alendronic Acid. It was discovered a few years ago that taking AA could cause necrosis of the jawbone if taken long term, as a result of which GPs are now advised to give their patients a break from it after 5 years. Dentists are aware of it and, in the event of dental surgery, usually refer such patients to hospital as a precaution. It is often routinely prescribed alongside steroid treatment for those of in this community who have PMR and/or GCA, but a DEXA scan should be carried out in the first instance to see whether a patient has any signs of bone thinning needing AA treatment or the like. Some people are vulnerable and may need bone protection but many of us don't and I was one of the lucky ones who survived 5-6 years of steroid treatment starting at 40mg with my bones intact in spite of having no bone protection at all, not even a calcium supplement which IS recommended alongside steroids. Having said this, there are many people who are fine on AA but, of course, if they don't have any problems then we tend not to hear from them. But the overriding advice is DEXA scan first and AA or equivalent if found necessary.

[PMRpro Ambassador]

Another example of why EVERYONE should insist on having a dexascan first, soon after pred is started. IF that shows a problem, THEN "bone protection" can be considered.

I was handed AA too by the GP, took about 4 tablets and went back - to a different GP - and argued my case to defer until I had a dexascan result. It turned out to be fine and I took no more, just calcium and vit D. Nearly 4 years later having been on pred the entire time, I had a repeat scan. It was on a different machine but essentially the result was exactly the same as the previous one - fine, no management needed.

Had I been on AA all that time I suppose I might have had a better bone density - but it wouldn't have been necessary and I would have been exposed to potential side effects.