Bleeding gums

[Loubprv]

Hi everyone,

I’ve buddied around 30 newly diagnosed ladies all of whom delightful.

Recently I’ve had a couple of queries re bleeding gums, which actually affect me too. Last time I went to the dentist, ( who I ‘ve known for 28 years now, and he knows that my father was a dentist, and that my dental regime is spot on) my gums were obviously bleeding copiously so he told me off for not flossing. Cheek!

If I floss it looks as though the battle of the Somme has taken place in my basin!

Flossing makes it worse, I can only use a soft brush.

So, question is, does anyone else have this problem? If it is reasonably widespread I believe our dentists should be looking into it as it could have a long term impact on gum and teeth health.

I really don’t fancy becoming a toothless old crone!

I take 1000mgs hydroxicarbamide every day and have had PV for 9 years but otherwise am absolutely tickety boo.

Hope you’re all feeling pucka out there today! I’m staying with elder daughter and husband, who after 5 years of trying and 3 rounds of IVF are expecting twin boys. Incandescent with excitement. The poor darlings have NO idea what they’re in for.

At 28 weeks Claire already looks full term, by Christmas she’ll look as though she’s gobbled a 28lb turkey poor love. Oops pardon the pun.

Best wishes

Louise.

x

[Swede]

Hi there,my husband is a dentist and have really looked in to this but....there are no proof anywhere to find.My gums are fine but I have fed him with worries and questions from this forum....

P.s I also work in the dental world...

[Loubprv Volunteer]

Hi Swede,

I’ve just had a look at a couple websites - cancer research and Mayo clinic re side effects of hydroxicarbamide and both mention either bleeding gums or taking care when brushing.

Must just affect one or two people.

x

[Sksarj in reply to Loubprv]

Hi Louise have you tried a water flosser (I use Water pic but there are others). My dentist was forever getting on to me about flossing which I hate with avengence so I bought one and love it. Congratulations re the twins how lovely. Regards Sue

[Loubprv Volunteer]

Hi Sue!

Thanks I will.

X

[lizzziep]

When I was first diagnosed I was told bleeding gums was a symptom of ET, my dentist also says it is. I was prescribed a mouth wash by the haematologist - it didn't make any difference. Like you my basin is full of blood when I have cleaned my teeth. I like the idea of a water flosser - I'll have a look for one.

[socrates_8]

Hey there...

Yes, HU & aspirin together is a disaster for bleeding gum episodes, in my analysis...

Are you also taking aspirin? And if you are... do you know if it is enteric coated? If not then swap it for the coated variety as it is much softer on the vitals, and may be a contributing factor to the gums bleeding etc... (?)

I now only use the Enteric-coated variety, & gum bleeds are now a rarity... However, I am no longer taking HU either...

Hope it all works out...

Best

Steve

(Sydney)

[Loubprv Volunteer in reply to socrates_8]

Hi Steve,

Yes have always taken the coated aspirin. From all the replies I think probably that bleeding gums might vary according to the patient.

Could be worse!

Enjoy Sydney, gorgeous at this time of year - my sister in law has been there for 35 years, just moved up the coast to some unpronounceable spot though.

Louise

x

[Rachelthepotter]

Hi Louise

Have you tried usng the little interdental brushes? They are much gentler than flossing, and come in different widths for different sized spaces between the teeth and get rid of the plaque nicely. I also use a soft electric toothbrush - more effective than a manual brush.

All th best

Rachel

[Loubprv Volunteer in reply to Rachelthepotter]

Hi Rachel,

Certainly will, thanks.

[tatty123]

Hi Louise,

I have exactly the same problem. I take 1500mg HU and aspirin each day.

I use a child’s toothbrush to clean my teeth and it does help.

Occasionally I do get quite a serious bleed from my gums and one was so bad I took myself to A&E. Sadly the doctor I saw didn’t even know what ET was so I had to tell him. He told me it was the aspirin which causes the bleeding but I wasn’t 100% convinced it was just that. One piece of advice I was given, if my gums bleed and won’t stop, is to put an ice cube on it. This does work as I have had to do it a few times now.

I hope that helps a little.

I’m also going to try a water flossing to see what that does.

Natasha xx

[Deefen]

I too am one of those newly diagnosed - I’m only on aspirin. I’ve never had bleeding gums?? But I did have a big bleed into the white of one eye just out of the blue about a year ago - which now makes me think??

My daughter has just started IVF - cross fingers for me! Here (Australia) they’ll only implant one embryo- so twins are unlikely. Though it would def be more bang for your buck! 😉

[Loubprv Volunteer in reply to Deefen]

Hi, thanks so much.

I’m sure you’ll be fine!

Wishing your daughter all the luck in the world with her IVF. No one knows what a distressing and stressful time it is unless involved, and our daughter and husband were incredibly stoical. They’re cutting down on IVF treatments on the NHS here in the uk which is shocking. Cambridge doesn’t have any free IVF now.

Free treatment for all those ghastly obese people who need knees and hips, smokers who have lung cancer, drinkers who need new livers - all self inflicted, makes me mad. Not having a child is not self inflicted but can cause huge mental problems. Don’t get me started! These little boys at £14000 will be worth every penny though, although I do feel extremely angry that they have cost anything at all!

x

[Deefen in reply to Loubprv]

IVF has sadly never been free here in Australia - and Iike you I now walk around looking at people who smoke and are obese and feel so angry - just respect your body and good health! I’ve done everything I can to be healthy - exercise religiously, don’t smoke, have always eaten very healthily 🤨

[Wyebird]

I was diagnosed with gum disease years ago but did little until unrelated et issues. Now they are brilliant even though they’ve receeded a lot. Both my hygienist and peridontal specialist say NO TO FLOSSING. They endorse the use of interdental brushes think they are called Tepee. There’s a range of sizes. Of which I have. The size depends on your requirements your dentist will help you with that. I also use ‘Blue M’ mouth wash. I posted about this product months ago and had a positive response.

My bleeding gums has never been caused by ET just bad hygiene.

Not any more.

Let me know how you get on

[Loubprv Volunteer in reply to Wyebird]

Hi, thanks, pretty sure that my gums aren’t caused by bad hygiene but I might be wrong. I eat the diet of a caveman as well so certainly not that!

Will look for interdental brushes and water flossers, and see if they come up with a result.

I have a super dentist who I’msure will help.

x

[Wyebird in reply to Loubprv]

Oh please don’t think I was indicating bad hygiene I was referring to me. Do research Blue m good luck

[Loubprv Volunteer in reply to Wyebird]

No worries! xxx

[Rachelthepotter in reply to Loubprv]

Teepee is the brand name, but Boots and other chemists do other brands which are just as good. And much cheaper. Happy inter dental brushing - hope it helps.

[Mica11]

I never had bleeding gums until Hydroxy and aspirin regime was started a year ago, now have spells of bleeding gums, flossing makes it worse, tried interdental brushes, still bleed. Water pic will now be sought. Also have required 2 root canal treatments with a possible 2 more threatening....after many years of requiring no dental treatment I can only surmise it's to do with my meds.

[Nickthedevil]

Hi Louise I too have bleeding gums, made worse by flossing or using interdental brushing. I like the sound of water flossing. Congratulations on your news about twin grandchildren! How exciting, your life will change forever. Karen x

[Loubprv Volunteer in reply to Nickthedevil]

Thanks Karen. We’re sure it will. Can’t wait! X

[Searcher56]

Have you tried Neem toothpaste? Do you eat sugary foods, even fruit is quite sugary? My mouth feels "cleaner" when I don't eat sugary foods. I am ET JAK2+ 62 years old female on 9x500mg Hydrea weekly. Do you take Vit C and D3?

[Loubprv Volunteer in reply to Searcher56]

Hi thanks for your reply. I also am suspected to have a rare condition called MCAS ( diagnosis very difficult) which limits massively what I can eat, including anything manaufactured such as supplements, foods cont preservatives, additives and chemicals so mostly organic diet for me.

I eat little sugar but do eat about 5 apples a day which are high in quercetin which combats histamine intolerance - all very complicated.

I’m pretty sure bleeding gums are prob a combination of PV and MCAS and hydroxicarbamide..........could be a lot worse so not moaning!

x

[Annie46]

This has been one of my most significant symptoms since my ET diagnosis & intake of hydroxy . My dentist has checked my teeth & gums regularly so there is no obvious reason why . When I spoke to Prof Tim about it he was not aware of any connection . However, it’s an issue that crops up regularly on here& in forums . Like the X files the truth is in there somewhere . An friend with leukaemia was prescribed a toothpaste called Duraphat 5000 & that has really helped her . Worth investigating maybe . I have a range of toothpastes that I use each day - including Corsodyl . I’ll give anything a shot if it tips the balance !!!

Massive congratulations re the expected twins . Magic !!! Annie

[Loubprv Volunteer in reply to Annie46]

Hi Annie,

Tim also takes not much notice when I mention bleeding gums.

Will ask about the toothpaste. Thanks so much.

x

[OZland in reply to Annie46]

Also good is Closys rinse Quite Expensieve but does not contain alcohol

[beetle]

“I take 1000 mg hydroxycarbamde daily” might well be the answer to your question. My gums always bled on brushing while I was taking this and as soon as I changed to Ruxolitinib the bleeding stopped and my gums have now not bled in over five years - despite a platelet count of 29! I did not change my dental hygiene routine, only the medication. I guess it’s not fair to expect dentists to understand our conditions when we so often read the ill informed comments made even by some of our haematologists

[beetle]

I should add that even the so called specialist haematologist I was seeing at the time was surprised too!

[Loubprv Volunteer]

Do you,know? I think you’re absolutely spot on there.

I have a super haematologist now but the last one was like an old dinosaur!

x

[ihavegotet]

I am a dentist and i was taught in dental school that bleeding gums in the absence od gum disease can be an indication of a blood cancer. Thats how I diagnosed myself! I had the same thing and it opened up this pandora box for me. I ordered a blood test for myself and my platelets were in the 800s. Then i put 2 and 2 together and i have ET. I suggest you keep gently flossing with a waxed floss since not flossing can lead to gum disease and inflammation in our whole body.

[Loubprv Volunteer in reply to ihavegotet]

Thanks so much.