[pjollopParticipant]

I found some information that suggests that there may be a blood test that will tell you your risk of getting ONJ (Osteonecrosis of the Jaw) when taking Bisphosphonates like zometa. I would treat this with some caution until we've had some comment from the medics we know…but it [b]is[/b]interesting. Does anyone have any more info.

There are more details here:

http://www.lexi.com/individuals/dentistry/newsletters.jsp?id=april_10

Sincerely,
Peter Gore
Derby
(Currently off Zometa, with toothache, needing extraction which Dentists don't want to do)

[sandie58Participant]

Thanks for posting this Peter. I may be put on Bisphosphonates not because of Myeloma (although my PP levels are 7.9 and are creeping up everytime I see the Consultant). I am being tested for Osteoporosis as I have fractured a vertebrae. My Haemo. did check my MRI scan and confirmed it was nothing to do with Myeloma. I am very concerned after reading about Osteocronosis as I have always had problems with teeth and my jaw is not brilliant. Am seeing the dentist next week as I have a problem with pain above a front tooth and certainly don't want to start taking Bis. until I get this sorted. I'll take a copy of this when I go back to see my Doctor.
Best wishes.
Sandie

[DaiCroParticipant]

Hi Peter,

Thanks for that, I would have found it interesting as an article anyway but more so now that I started on Zometa last month after four years of Bonefos (apparently I slipped through the net). I will have my Zometa with my 2nd infusion of Bendamustine for as long as the treatment lasts and then as a stand alone after that.

Regarding your teething problems, I had to have an extraction before my SCT and my consultant referred me to the Doctor/Dentist at Queens. It was the best treatment I ever encountered. X-Ray, pre-op with 2 clinical nurses, the extraction in theatre-like surroundings and then 1 hour recovery in a restful side room before being examined by the Doctor before being let go.

I was told then that any further treatment would be carried out at Queens. Queens is local to you (more local than me… 20 miles the other way towards Grantham). In truth I could do with an examination and a scrape and clean but that is small potatoes for a busy hospital and local dentists won't touch Myeloma patients with a barge pole. Still, I have not had any problems since (I can't believe that I just stopped to touch wood) so I will trust in Zometa and hope that I don't have any dental problems between now and the cows coming home.

Regards

Dai.

[PerkymiteParticipant]

I have been taking Bisphosphonates in the shape of Loron since July 2009, two tablets every night. When I first started taking Loron I was told I would be on it for 2 years max because the risk of ONJ was high after this point. It turned out that the 2 year dead line was because nobody had carried out any clinical trials with people taking the tablet for over 2 years!

The last time I went to the dentist, about 6 months ago for a filling, there was certainly a lot more care taken not to disturb any other teeth, it went ok.

Since that time I have been informed I can have anything but an extraction done. If I want an extraction I have to stop taking Loron for one month before and 3 months after.

Kindest regards – vasbyte

David

[pjollopParticipant]

My situation is that I have toothache and need an extraction or two after having been on Zometa for 3 years. (They are not stopping zometa after 2 years like they used to) I've been off zometa since the end of October .'
[b]my[/b] information (and that of my haemo consultant) is that the risks of osteonecrosis decrease greatly after you have been off it for 3 months. The hospital maxilofacial unit say that because the drug has a 'half life' in the body for 10 years (true)
The risk of osteonecrosis is there for 10 years. This would seem to leave me on paracetamol painkillers for 10 years. Novartis (who distribute the drug) will not talk to me.

In my view the situation in the uk regarding zometa is unacceptable. There is no clear information as to the risks (as you can see from the above) . The same doseage is applied to all although clearly every patient does not [u]need[/u] the same doseage or regularity and there is no monitoring of bone density or other testing to try to match the patients requirement to the regularity of treatment or amount of doseage.. In the USA they are tending to reduce the dosing after two years to every 3 months.
Please forgive this diatribe, but constant toothache makes me grumpy !
My best wishes to you all…
And may the medics get their acts [u]together[/u] !
Peter

[DaiCroParticipant]

Forgive me Peter, I am not trying to be glib or make light of your points which I fully take on board but if I have to take paracetamol for ten years I will be the happiest man alive. 😎

As a matter of fact, right now, I'd settle for 2 years.;-)

Dai.

[pjollopParticipant]

Agree with that sentiment, 😀

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