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Bleeding gums (night only)

Hi everyone,

Does/has anyone experience bleeding gums mostly at night while on TKI? I have seen it’s a common side effect from various sources online. I believe mine started about 8 months ago. My last blood test was 6 months ago and all levels were normal. I am on Nilotinib 600mg. Borderline MMR at last test @0.164%

I have changed tooth brush to a much softer one and I regularly use Corsydol toothpaste in case it was gum disease which it could still be a little.

Any suggestions and strange how it appears to be while I sleep and only around a few of the larger wisdom and back teeth? I would have thought if low blood levels or TKI it would be uniform around other teeth.

Many thanks

Alex

Hi Alex,

it does seem strange that it is only your back molars/wisdom teethe have the problem. Other than making sure you adequately clean and massage all of your gums - a little harder to do that for the back teeth - is there any sign that you may grind your teeth/clench your jaw during sleep?

Sandy

Hey Sandy

I do grind my teeth for sure and I am certain I also clench my jaw while I sleep. That plus the fact I often “suck” my teeth. I just got a little worried it was CML/TKI related. But I had seen bleeding gums is noted as a common side effect but is also pointed out on other sources to call your consultant if you have unexplained bleeding ie the gums. Difficult to know. I have an appt on Friday for my latest PCR so will mention it then if nothing is off with my counts which their shouldn’t  be as this has been happening for sometime.

Many thanks for your reply

Alex

Hi Alex,

I have issues with grinding of teeth to the extent that some of my front lower ones are chipped and ground off -I suppose that I could have a few crowns put in but so far have not gone down that route.Mine is a sub mandibular joint problem where the jaw meets just below the ear so if I do not do the daily exercises of the neck and jaw I am plagued with neck pains, ear pains etc etc. I dont want to go down the route of surgery so am stuck with the exercises.  On the grinding my dentist made me a plastic shield which I should wear at night over the lower teeth so that I cannot grind and do any more damage -it involves taking a cast  and then having the lab to make it for you.In addition you might find that a special pillow will help your jaw/mouth to relax better at night-if you google best pillows it might come up with some suggestions but some are up to 100 pounds/ dollars.

The gum issue might be unrelated to the teeth grinding. I have some suggestions.See if you can you find a mouthwash that contains Chlorhexidine Gluconate Antiseptic (0.2%w/v Oromucosal Solution) -I assume you are in USA? In UK Superdrug do their own version.I used it after extraction and it was brilliant;my dentist said be careful as it stains the teeth badly but it is great for preventing any mouth/gum infection or preventing it. Teeth staining then involves extensive cleaning. The other alternative is any kind of iodine based mouth spray-I cant find in UK but when working in Asia  I found lots of effective ones.

I know how you feel, as when bashing my hands in the garden doing jobs I bruise badly and think is this normal or when I have cramps in the rib cage think is it my spleen, but so far these are spurious thoughts!  We always think perhaps am I moving or transforming /translocating into accelerated phase? If your bcr/abl and bloods are in order then your issues I suggest are otherwise.

Regards

John

Hi John

Thanks for your reply. I am in the UK so will check out your recommendation for gum shields and the mouth wash. I am sure I am clenching my jaw at night so could well be this. PCR results on Friday so hopefully all ok there. And hopefully down as I was stuck at my 24 month appt this will be 30 months borderline MMR 0.1. Oh the joy haha.

Hope you’re well

Alex