I have always taken good care of my teeth and, until I was put on Hydroxy, had no dental problems at all. After 6 years of Hydroxy my gums have receded, my teeth are just breaking off and I have had to go to 2 101 emergency dental appointments as I cannot get an appointment anywhere because of Covid backlog.
Today I had my telephone consultation with the Haematology Dept and spoke to a new doctor I have never heard off. I explained the dental problems I was having and would it be possible to be referred to the hospital dental dept, bearing in mind I am on lifelong warfarin as well. I was told by the person who I was talking to that he was a very new trainee doctor but he said people had been taking Hydroxy for years with no dental problems. I responded that he should talk to the people on this site for whom this is a common problem taking Hydroxy.
Again I was left feeling unheard and with no solution. So those of you who have dental problems, you must just have bad dental practices according to this guy.
Written by
jillydabrat
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Oral toxicity is common with HU, though usually in the form of ulcers. "Mucosal lesions were more frequent in females (62%), mostly in the oral cavity (96%), and were characterized by pain, burning sensation, and in few patients by weight loss and teeth decay." onlinelibrary.wiley.com/doi...
I know we have had this reported by others on the forum, but I expect this is an uncommon adverse effect. There are likely not many who have had this experience. Perhaps they can weigh in with more details.
My PCP says that the simplest explanation ids the best explanation. If you 1 had no teeth decay issues prior to taking a drug + 2 nothing else changed when you started a drug, then the result likely = 3 an adverse effect. Sometimes 1+2=3.
Another great question for a MPN Specialist that is actually familiar with MPNs and the more rare adverse effects of the meds used to treat. Since I doubt seriously that you spontaneously stopped your oral hygiene when you started HU, you are asking a reasonable question. Hope you get a reasonable answer.
Hi, I too have an issue with shrinking gums. I also have been complaining of a burning sensation for the past 18months that I've been convinced was because of the Hydroxycarbamide (3 1/2 years) and after looking at the piece put forward by hunter5582, I now know for certain that it's the cause. Luckily so far I've not had an issue with my teeth. Good luck with getting sorted
Hi I’m really sorry to learn this and how irritating it is to get that response from a professional. Over a year ago others complained of having teeth breaking & I believe one person said her jaw bone was deteriorating. I don’t know if you want to ask Mazcd if there’s a way to find these prior postings? Beyond words. Katie
if you look at the right hand side of the screen you will see Related Posts, this is where you can view other posts about dental problems and if you want to search for posts about any topic, on the top bar you will see the tabs Home Posts Members About Admin, if you click on the Posts tab you will see a search bar on the right hand side Search Posts on MPN Voice, you can put in any topic and search all the relevant posts about that topic. Hope that helps, Maz
Hi, reading your post it makes me wonder whether the tooth sensitivity to hot/cold drinks that I have recently developed is due to the HU that I started a few months ago. Clearly a minor issue (now using special toothpaste that seems to work) but I wonder what the longer term effect might be or whether this is really due to the HU. Uncommon side effects are difficult to ascribe, unless one discontinues use of the drug I guess. But not being taken into consideration just because something is not generally recognised as a side effect is not good practice, it means that uncommon issues will be constantly brushed away. During the first lockdown I had a telephone consultation with the haematologist and reported having a rash. The answer was: cannot be due to PV, rash is not common, just try changing the washing powder, probably allergic. To cut a long story short, months later, with the rash having become a big issue, constantly spreading, I resorted to a private dermatologist to start the process of being taken seriously. Why did the haem not refer me straight away to dermatology? I was eventually diagnosed with skin sarcoidosis, an inflammatory condition, and taken into the care of the NHS hospital's dermatology dept, but it took me almost a year . The covid pandemic surely played a part in this initial lack of care but this experience woke me up to the fact that we have to be ready to vouch for ourselves.
Oh how awful, it’s only the last 8 years I’ve had a good dental regime. Can’t believe how bad it was until I met this new private hygienist. Because of her I’m confident that I will hold on to my teeth fir life. No problem with hydroxi and I have gum disease albeit minor now I really feel for you I would be so despondent. Grounds for different medication me thinks. Good luck
I have trouble with my gums, I get a lot of bleeding from them. Most of the time I look like a greedy vampire! My dentist says the ET and the drugs (formerly hydroxy now Anagrelide) contributed towards it, also my old fillings attracted plaque and this also contributed towards the bleeding gums. I’ve invested in a water flosser which has improved the condition slightly. The dentist also asked if I’d had a vitamin B12 test as lack of that, apparently, affects your gums. I’ve asked for that test to be added onto my blood tests this time - results tomorrow. When I had ulcers on my feet haematologist, nurses, GP all said it was nothing to do with the hydroxy I was on at the time, when I eventually got to see a dermatologist, after months of agony, she said I don’t even need to examine you skin problems are a common side effect of hydroxy, gums are skin too! She contacted my haematologist and I was put on Anagrelide instead. No comment from haematology! The dermatologist said that often people are left on hydroxy as it is cheaper than the other drugs. Hope you can get some help. X
Yes I have similar problems my teeth are looking stained I enquired about seeing hygienist but was told it would be too dangerous due to heavy bleeding.
So sorry to hear of your tooth problem Jill. Haematology Dr.’s response not good. I get sore gums but up to know my teeth don’t seem to be affected. On the other hand (or foot!!) my toenails are white ,flaky and brittle , Iknow Hydroxy can do this. Hope you can get advice soon. Good luck, Fran
I am sorry to hear of your problems and the lack of credence given them.
Thank you for posting.
I have been noticing more irritation around my gums after starting HU, but it is so very minor that I assumed it was my less than stellar attention to dental care (and that may still be the case). I'm not horrible about it, but there is room for improvement. I now know I should be more careful from this point forward.
Since my pv diagnosis I have had 3 spinal fractures and 2 broken teeth. I was on hydroxycarbomide for the first 2 years. One consultant admitted that problems with the bone marrow will weaken the bones.
Hi. Can you tell me if you ever read anything about this or were just told this? If you read it do you know where I can find it?I’d like to find out more of the potential problems. Thanks Katie
I've read a number of articles online that say people with PV have weakened bones, which is what made me question my haematologist. Don't know how to share links I'm afraid. Google it and you'll be surprised how many articles there are. I remember one was on the British journal of haematology.
I too keep having breaking teeth 😪. However, I'm on Peginterferon and my first tooth broke 6 months before I even started treatment and 3 weeks into first lockdown! Hence, emergency appointment and only a temporary filling. I have had 3 other teeth break since then (the last one yesterday) and have had to pay private for the last two as I couldnt get into any NHS dentist!! I thought it was just me, even though I practice good oral hygiene, but after reading posts on here, I am now wondering if it is due to our condition. I am at the point where I am conscious of everything I eat and choosing the softer options! I shall be mentioning it to haematologist at my next appointment in November.
Hi Jill, I too have split teeth and residing gums and have ET and jak2+ having never had issues with my teeth or gums in fact maybe a bit (ocd) but I started to notice after around 2yrs of hydroxy my gums started being painful and puffy and also I have 2 cracked back teeth it's worrying but I do use very good tooth paste and when there really painful I use collate proxy mouthwash and also diflam mouthwash helps with the pain just to say I feel your worry I think many of us do I hope you manage to find a way to calm things down tack care jadeanna x
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