Thursday, 24 April 2014

Bisphosphonate-associated Osteonecrosis of the Jaw

I thought I should do a post about my bad experience with bisphosphonates which are bone hardening drugs that help to strengthen the bone (and reduce the risk of fracture), reduce pain in the area and also help with preventing the release of calcium into the bone. The problem I suffered from them is really, really rare and maybe my experience will help someone. It's called bisphosphonate-associated osteonecrosis of the jaw and unfortunately, was the catalyst for the infection that landed me in hospital in February.

Originally, I was receiving a bisphosphonate called permiginate every four weeks. This was given to me intravenously at the hospital and took about two hours. It's not an unpleasant experience and there were no side effects that I noticed - some patients feel a bit flu-y and/or sick apparently. But as I mentioned in this blog post, despite taking it, I still suffered from high calcium levels which ended with my being back in the hospice being pumped full of a different bisphosphonate (Zometa) to reduce them. This particular brand only took 15 minutes to administer and worked really well to reduce my calcium levels, so we agreed to switch to that one from then on.

And then, as documented here, my mouth went wrong; probably around September 2013. I don't think it was anything to do with switching versions of bisphosphonate but part of me does wonder. The bones in my mouth started to poke though the gums at the side and scratch my tongue. I mentioned this to the oncologist who said to go straight to the dentist; the earliest appointment I could get was December. Love those dentists! The dentist had a look and that was when I was referred to the maxilliofacial department.

Luckily, the maxilliofacial appointment for this came through very quickly - to be honest, they have been, and continue to be, pretty good throughout the whole debacle. They confirmed that it was probably due to the bisphosphonate - and also that it had probably been happening for a while, so before the type was switched - and reassured me that it was unlikely to be something cancerous. We also agreed that I would have an operation to smooth out the bone inside the mouth so it was no longer scratching the tongue, but there was not much else that could be done. And there you go, the rest of my experience in this matter is history; the operation triggered an infection and I ended up in the hospital and hospice for several weeks.

In terms of what I had (have?) where the bone pokes through, it's called Bisphosphonate-associated osteonecrosis of the jaw. It seems it's only recently been identified as a side effect and is extremely rare. I spoke to a nurse who had 20 years experience in this area who said she had never seen it. Then I heard one in 500,000 taking bisphosphonates may get it. And that would be me. Yay!  Unfortunately, it's not going to go away and the bone will always be exposed in my mouth, but the maxilliofacial department have done a great smoothing job so it doesn't bother me any more.

So I guess the point of this post is to reassure anyone else who may get it that this disease isn't so bad. Just make sure that there is minimal risk of infection if any oral surgery is needed, especially if one's immune system is compromised like mine. Smoothing the bone has been brilliant and well worth it, despite the subsequent infection. To be honest, if it hadn't been this, would it have been something else?! I also need to be really particular with my oral hygiene, so thorough but gentle brushing, flossing and special mouthwash.

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