Its been a while since my last post but I do still check in to see what's occurring.
I have a question that I hope someone will know something about so that I can process things before asking questions at my next appointment.
For all of my adult life I've been complimented on my teeth, I looked after them well after having surgery as a 12yr old because I had three sets instead of the normal two and had to have corrective treatment. And now at the ripe old age of 63 after a very intense two year period (after Ibrutinib) I have lost all but 9 of them, back and forth to the dentist every month for extractions and being told that all my roots were soft and getting infected through decay. Am I clutching at straws to think that this is a side effect to Ibrutinib. They had to take me off it anyway because of the cardiac arrest episode I had but the dentist has suggested there could be a link with the treatment I've had as they'd only ever seen me for check ups before.
Regards
John
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saintjohn
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Hi John,Good to hear from you again. Since I've been on Ibrutinib I have lost two teeth. I've so far put it down to old age (62). Like you I've had pretty good teeth. However I have noticed that my teeth have been very prone to infection if I have had an intervention, so both crowns have ended up with extraction. One of those resulted in a 5 day stay in hospital as the infection was so bad.
As I say I've only noticed a problem where I've had a crown (one due to cracked tooth and the other due to large filling). Healthy teeth have been unaffected.
I do have a problem with my eye and I wonder about a CLL /Ibrutinib connection, but that will be the subject of another post.
Hi Calopteryx.Good to be back, to be honest didn't really feel up to much last year hence the lack of posts, well that and the fact that I spent a total of 21 weeks in hospital over the course of the year with various infections. Can't seem to get on a regular footing health wise, they took me off the Ibrutinib in October 2019 after a cardiac arrest that saw me down for 8 minutes before they got me back, been pretty much unwell one way or another since then, still as mad as a box of frogs though so that gets me through the darker times.
Heck John, you've had a rough year. No wonder you've not been posting much. I hope things get better for you. I'm interested to know what you are on now if not Ibrutinib? I ask because I'm almost 5 years into the Flair trial so have only 2 more years left. Just wondering what the future holds as I believe you attend the same haematology unit as me.Very glad to hear you're still as mad as a box of frogs, where would we all be without a sense of humour
I'm back on W&W and monthly immunoglobulin , monthly blood checks let them know if there are any significant changes but for now they are holding off on anything else whilst the Heart team try and get that side of things sorted, As long as my bloods remain relatively stable I'm happy, just wish I could stop getting all these infections and Hospital stays out of the way.I thought you were under Southampton ?? I'm under the Winchester team.
Alternately you can create a list of unlocked postings by inserting this string into a standard Google search: < site:healthunlocked.com cll support/ibrutinib+tooth+loss > which give 73 postings.
Or any other terms like < site:healthunlocked.com cll support/ibrutinib+teeth > which give 279 posts.
I was interested in reading your post, i started Ibrutinib July, 2020 and since then one of my teeth suddenly broke and I have only root left, now another double tooth is wobbly and the area is tender. I have been taking Alendronic Acid tablets for osteoporosis and I stopped taking it as I thought that was the cause.
A response for the general reader of your post..There is a whole lot of health information to ponder in relation to bone/teeth density, mineral sufficiency.. Influence of diet, of trace minerals, such as boron, of vitamins D, K2, of major minerals, esp magnesium, with calcium more of a topic where water supply is soft water (via granite bedrock, such as Japan, Scotland, or through granite/slate - in Wales)
Another aspect is our immune compromise.
My further interest arose due to mum having Sjögren’s syndrome; auto immune disorder affecting multiple secretory organs, from saliva glands, to tear glands, also liver secretions etc etc..
..this has consequences: dry eyes, failing liver, rotting teeth — saliva has amylase to digest starch and alkalinity to neutralise acids..
And now my own dental caries (tooth decay) .. What to do?
I try to look at nutrition first.. avoiding sunshine (we are ~8x more at risk for skin cancer, and my first has been removed from my forehead.. ) I take vitamin D.. and K2 (these are recommended together) and magnesium glycinate/citrate .. together these influence deposition balance of calcium/magnesium in bones versus, less helpfully, in soft tissue.
UK health bodies have grown very timid of iodine containing products — here notably Betadine mouthwash: a most effective oral sterilant still available in continental Europe.. probably not something to use all the time, but just a little a few days at a time, may be helpful, especially at worst of neutropenic state. I suspect that Betadine mouthwash is likely 0.3 mg of iodine in one rinse and spit.. we need circa 0.15mg intake per day
[for perspective: if a nuclear incident occurs, we will all be handed 50mg tablets, plural, to prevent absorption of radioactive iodine.]
Whilst iodine is involved with thyroid, and the medical science gets complicated, long ago, medics would treat hypo and hyper thyroidism with lugol’s iodine [a solution of iodine with potassium iodide], finding that many cases responded well, suggesting that iodine deficiency can cause both [most UK salt is not iodised.. many other countries use iodised salt to mitigate against iodine deficiencies] I carry a small bottle of 3% lugol’s iodine for treating cuts etc — a highly effective anti bactericidal.
My pharmacist commends a little whisky - claims that drinkers of spirits suffer fewer dental caries (tooth decay) - thus I may have a nip (a very little) late at night, this instead of shop mouthwash products. [I have no one to complain that I smell of whisky!]
We do well to use a soft toothbrush and have a little brush quite soon after each meal. Also to avoid sugary/starchy foods away from tooth brushing activity.
Always keep your doctors informed of your supplement intake.
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Not sure this is particularly helpful to the post author.
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