Hi
Does anyone else out there who is taking hydroxicarbamide and has PV, have profusely bleeding gums if flossing or brushing with anything other than a soft brush?
Electric toothbrush a nightmare....looks as though someone has committed murder in the bathroom basin!
My dentist blames my bleeding gums on my poor dental hygiene, cheeky beggar, but my father was a dentist and I know my hygiene is spot on!
All replies most welcome.
Thanks
Louise xxxx
Hi, well, your saliva changes sometimes ( for worse) which I am sure you know, and that can be one reason. Our disease and medication isn't really helping so we need to be extra super duper carefull and do everything we can all the time. Some people are born , very prone to have gum disease etc, but we sort of get it , through no fault of our own, along the way. I work in a dental practice and my husband, brothers in law, father in law are all dentists and I have talked to them over and over again, regarding our problems. (I am lucky as I have no problems with my mouth and teeth)but they cannot advice anything else. See the hygienist every 3 months and floss, brush and so on...every day, twice a day. It is really all we can do! I hope it calms down for you as it isn't really nice to bleed like that.
Keep up the good work!
Baby tooth brush,baby tooth paste,salt and water(boiled )also found a good mouth salve for ulcers on Amazon,sorry forgotten brand.I have stopped flossing ,just makes bleeding worse, Good Luck Louise,babies to care for now.,they look fab,Best wishes Sally
Hi Louise, as you might guess I'm afflicted by bleeding gums down to receding gum line , partly due to treatment and possibly age related. I use the smallest soft bristle head brush I can find and this helps. Also I use mouthwash during the day. Flossing and any vigorous cleaning is a no no. The dental hygienist knows my issues and gives my nashers a sensitive clean using more of a polishing or buffing type tool rather than the harsh hard one.
Of course you could have them all out and get some dentures . I've had a couple of extractions earlier today and still bleeding a tad so maybe best keep taking care of yours.
Chris x
God. I’m beginning to think a blooming burkah might be the answer.
Just think, I could sink into an old hag and no one would know!
On the other hand, as you say, I could remortgage the house and get implants.
Thanks for the info anyway. My dentist is not understanding whatsoever and I’ve resorted to finding one at guys in London who specialises in haematological disorders !
Hope your probs sort themselves out Chris, you haven’t half had a bucketful.
Heaven knows how you look so well..... battle of the Jedi indeed.
Don’t let the buggers get you down. 😊
Stay in touch.
xxx
Hi Lou
I’m ET on Peginterferon and I get very bleedy gums! Some days a light pink other days deep scarlet red. My dentist was very aware of the effect MPN’s can have on the gums...I was very surprised! She just tells me to ease off when it’s bad but to brush away when it’s good, and feel free to floss. No judgement at all and assures me it’s not due to dental hygiene. She has it in my notes now to take into consideration when I go for my check ups.
I think it’s more a disease thing than a meds thing. Not the most pleasant but I try not to use harsh mouth washes? Just corsodil when it gets bad. I use a sonic toothbrush and regular toothpaste. No teeth falling out yet so it must be ok.
Actually had a random bleeding gum in work one day...had to hide out in the toilet until it subsided...like we don’t have enough to worry about 🙄
Best wishes
Kerry 
Hey Lou... 
Is the aspirin you are taking 'Enteric-coated'?
I had a similar problem and eventually found it was the aspirin causing my issues...
Best wishes
Steven
(Sydney)
Hi
I have bleeding gums, but i’m on warfarin with ET Jak2+ and I put it down to that more than the ET.
Since the warfarin will likely be a long term thing for me, at my last visit my Haem said there was a mouthwash he could prescribe that hospital pharmacy would make up if I needed/wanted. I might give it a try.
Hope you find an improvement.
Regards
Cath.
Hi I’m et Calr and am extremely lucky. I dont suffer with bleeding gums due to ET but do have receding gums.
Look up ‘Blue m’ products new to the market. I have posted about this before. ( was it to you?) I don’t know if anyone has found it helpful. Good luck.
Just to add to the disease v meds’ argument I will say that I had bleeding gums for years while taking HU. As soon as I changed to ruxolitinib and despite my platelets falling the bleeding stopped immediately and has not recurred. No other changes happened at that time.
What a good lot of advice everyone thank you. I've been to dentist recently and although an avid toothbrusher-(I tend to daydream and can be going for well over 5 mins whilst doing my teeth) I'm struggling with a couple of receding areas and bleeding but now I may blame the HU. I've just ordered some of the Blue m oral gel so thanks Wyebird for the tip.
Exactly Heidi! Thank you you all so much for all the tips and info.
I too shall order some of the Blue m oral gel .....yes it was me who posted not long ago, but being a bird of receding memory as well I’d forgotten that I’d posted.
I’m also beginning to think that the daily large dose of Piriton I take ( I have histamine intolerance and probably MCAS - not PV related so don’t panic) to make life tolerable itch and eating wise is having an effect.
Still, I’d rather have a decent quality of life now and hop off to Dignitas if and when I go batty!
Louise
x
Hi lou,just to say,how much i enjoy reading your posts,your sense of humour is infectious, love the quips about 'being a bird of receding memory' and the one about Dignitas had me rolling about lauging,its good to have a good laugh and please don't take offence louise,to hear someone of age saying it makes it that much funnier, keep them coming, it's good to laugh,me thinks you have a mischievious side to you. Atb, tina.🤗
You disease and medication are more likely the culprit. The rougher you are on cleaning your teeth, you are likely exacerbating the bleeding
- so keep it gentle and allow your periodontal tissues to heal while still maintaining hygiene.
Hi Tina,
Aha! You guessed. I do have a very mischievous side - I’m also feisty and don’t suffer twits easily!
Research bleeding gums and vitamin C. You should try 15ml of liposomal vitamin C three times a day until the bleeding stops then continue with 10 ml liposomal vitamin C or liposomal vitamin C w/ quercetin plus 5 ml of liposomal curcumin. Vitamin C will help prevent bruising through it's involvement with collagen.
Thanks so much, gums actually much better - have been really having a go with a teepee and an electric tooth brush, but will try supplemts.
Besremi - Sore throat, swollen/bleeding gums
Bleeding mouth
Receding gums
bleeding 
