Bleeding gums

[lizzziep]

I’ve had bleeding gums on and off for years, dentist said due to ET and medication. But lately the bleeding has got a lot worse, one day I even had a couple of clots in my mouth, plus bright red blood coming from my gums around my back teeth. They’re feeling quite sore and my throat is also starting to feel sore.

Has anyone else had it as bad as this?

I also have a sliding hiatus hernia so often get acid reflux which has probably contributed to it as well.

I’ve managed to get a dentist appointment tomorrow.

[JediReject]

Hi Lizzie, , sorry about your gums and how it's affecting you, it sounds awful and traumatic. I can empathise to a degree as mine are compromised from my GVHD and subsequent often harsh treatment but something doesn't seem right that yours are bleeding so much given all mine have been subjected to. Though I know we're all different. I see you gave a dentist appt but have you been referred to a maxcillofacial dentist at all as it might be worth a specialist taking a look. Haematologists are experts in their sphere but I recently had a growth on the roof of my mouth and rather than second guess it I was referred to the hospital dental team for a biopsy. That's another story !

Hope you get some respite.

Regards Chris x

[lizzziep in reply to JediReject]

I’ve got a telephone consultation with the haematologist in a couple of weeks so will see what they say, also what the dentist says this morning. Hope you can get your mouth problem sorted quickly x

[hunter5582]

It is important to understand that ET/PV can cause hemorrhage rather than thrombosis. When your platelets get high, it is the risk of bleeding that can go up the most. Aspirin or other blood thinners can make this worse. If you are seeing a significant increase in hemorrhagic symptoms, then a von Willebrand Panel would be a good idea. acquired von Willebrand Disease is a risk of thrombocytosis and there is evidence in the literature that this can happen at levels lower than previously thought. There are also more subtle increases in bleeding that some of us experience with thrombocytosis.

You do also need to rule out some form of gum disease. Have been there and done that. You dentist will give you a read on that issue. FYI - I used to have significant issues with plaque/tartar and gums/bleeding. Correcting my microbiome seems to have made a profound difference.

FYI 2I also have GERD and a hiatal hernia. I believe this is linked to the JAK2 mutation. The JAK 2 mutation increases the production of inflammatory cytokines. This certainly does affect our GI tract. GI inflammation can also make the thrombocytosis worse. It does other things as well (See references to the Gut Brain).

It is all linked together. Our bodies are integrated systems. Hope you get it all sorted out ASAP.

[socrates_8 in reply to hunter5582]

Hey Lizzie...

Sorry to hear about your gum bleeding issues...

Yes, I did actually suffer quite badly from this in my earlier stage when on HU, and 100mg low dose aspirin daily...

Is your Aspirin, (if you are taking it?), Enteric-coated? If not then change asap!

If it already is, then maybe task your MPN specialist, and perhaps you might be able to reduce your Aspirin / blood thinners... (?)

How high are your platelets at present? If not too high then your medical team might suggest something like changing from Aspirin to Clopidegrel etc...?

Best wishes & hope you get it sorted quickly...

Steve

[lizzziep in reply to socrates_8]

Yes I am on aspirin, it is the coated one. I’ve got a telephone consultation with my haematologist in a couple of weeks so will see what they say and what dentist says this morning.

[lizzieET in reply to hunter5582]

Hi. Much of what you say resonates with me. I'm really interested in what you say about your microbiome. How did you approach those changes?

Thanks luz

[hunter5582 in reply to lizzieET]

I tried several different things to improve my microbiome. I did use some probiotic lozenges that were designed for dental health, but they never seemed to make any difference. What is work was a combination of things. I take a daily probiotic capsule. I change the formulation every month to maximize diversity. I don't care much about brand, but buy higher quality with higher counts of bacteria colonies. I also eat yoghurt on a regular basis, along with various fermented foods and prebiotics. I eliminated artificial sweeteners and limit refined sugars. I do use Stevia when I want a sweetener or a soda, but not a lot of that. I eat whole grains almost exclusively. I initiated much of this after a year on hydroxyurea compromised my intestinal endothelium causing chronic constipation. I figured I needed to give myself the best chance possible to repair my gut and its microbiome. It seems to have worked. The change in my dental health was unexpected. I use to have to go for cleaning every three months because the buildup and gun irritation was so bad. I am now on an every six month schedule. I can't prove the improved dental health is the result of the changes to my gut health, but I believe it is related.

Hope that helps.

. .

[lizzziep in reply to hunter5582]

Thank you. I think a lot of research is being done on how gut health affects the rest of the body. I’ve started having probiotic yogurt every day and am trying to cut down on food with sugar in. I have a lot of fruit and veg and whole foods.

[lizzieET in reply to hunter5582]

That's fascinating thank you. I changed my diet in 2014 when I started hydroxy, cutting out refined and hidden sugars and couldn't believe the difference in how I felt.

My gums are a cause for concern so I'm going to do some work on this now and see if I can change that.

Thank you.

Liz

[hunter5582 in reply to lizzieET]

There is some research into MPNs and gut microbiome as well as the impact medications used can have. Short version = HU has antimicrobial properties. I think it just emphasizes how important it is to take good care of our microbiomes. It will be interesting to learn more about this as microbiomes also play such an important role in inflammation.

ashpublications.org/blood/a...

sciencedaily.com/releases/2...

ncbi.nlm.nih.gov/books/NBK5...

[lizzziep in reply to hunter5582]

I heard a doctor on tv saying the gut was equal to the brain !

[hunter5582 in reply to lizzziep]

The gut bone is connected to the brain bone! Actually it really is connected neurologically via the vagus nerve and biochemically via catecholamines, cytokines and cortisol.

[Kari1961]

Hi Lizzie. I also suffer from bleeding gums, but not to the extent you do.

I used to be a dental nurse, and have always maintained good oral hygiene. I spend a fortune every month on dental care - toothpaste, mouthwash, floss and interdental brushes and my gums still bleed.

My haem and dentist both say it's due to taking Aspirin.

Hope you get it sorted soon. Kari.x

[lizzziep in reply to Kari1961]

I’ve always been careful with my teeth - got a horror of false teeth! I’ll see what the dentist says today.

[lizzieET in reply to Kari1961]

My oral hygiene routine is good- my hygienist is fantastic and has helped me really nail it, but having not seen her in lockdown hasn't helped. I've an appointment now early March to see both dentist and hygienist so will be able to talk it through with them. I am the only patient in the practice with a diagnosed MPN and they work with me brilliantly around it.

Thanks for your reply Kari

[nodmeister]

I'm having all sorts of teeth and gum problems. Something is damaging my teeth inwards to outwards. My dentist hasn't a clue but suspects it could all be connected. Have another one out tomorrow and a replace added to the horrid dentures. I am E.T. triple neg/MPN-U on asprin and Hydroxy although I'll be getting that changed Thursday as I cannot tolerate high doses required. Take care everyone.

[JaK2ET]

I hope you get good help from your dentist.

[JediReject]

Hi Lizzie , , please let us know how your dental appt went . Hopefully offered some helpful advice. . . Chris x

[lizzziep]

Well I’ve been to the dentist, he said I had some plaque around a couple of my back teeth which had caused inflammation which had then spread around my mouth. He also said the excessive bleeding was due to a combination of ET and aspirin and to mention it to the haematologist. He couldn’t do the plaque cleaning as that requires special PPE, got an appointment with the hygienist but not until mid-April, until then he recommends rinsing with Corsodyl 3 times a day and not to worry about the bleeding as it would clear up. I’ll see what the haematologist says about aspirin in a couple of weeks. Thank you for the replies and advice 😁👍

[JediReject in reply to lizzziep]

Hmm well semi helpful , kinda guessed it might in part be bounced back to your Haematologist! I got a good mouthwash called Endekay on prescription from my dentist along with Colgate Duraphat toothpaste higher I fluoride I think. Of course Corsodyl is recognised first line mouthwash. I know your hygienist should be aware of your gum issues but I reminded mine of my receding gum line tenderness and to please go easy. Years ago I had to halt a cleaning treatment which was just too harsh for me to endure for long and I felt might loosen some teeth.

It's a step forward for you. Chris

[lizzieET in reply to lizzziep]

I have a dental appointment as one of my molars is now loose as a result of my gums. My dentist thinks it's the combo of ET, hydroxy and aspirin, plus I make a lot of plaque.

What a pain!

[Pte82]

lizzziep, try liposomal vitamin C. It is active longer with a higher absorption level. Vitamin C is needed to build collagen among other things. Using 10 ml three times a day will help those gums and your body. Always consult your health care professional before using any supplement.

pharmacytimes.com/news/gum-...

pdsa.org/treatments/complem...

[lizzziep in reply to Pte82]

thank you!

[Meatloaf9]

Suggest to have a dental check up and a cleaning by a dental hygienist if you are able. Then you might want to check out a oral b electric toothbrush. They now make a brush head for sensitive teeth and another for gum care. Only certain handles have the modes for sensitive teeth and gum care so be sure to pick one with these options on the brush handle if you decide to try this out. The brushes with at least 5 modes usually have both these modes. Don't forget the flossing. I don't think it will help with bleeding if the problem is a systemic blood problem so have your counts checked . Having blood clots in your mouth sounds like it may be more than just a dental problem. Ask you dentist and hematologist before purchasing. Best of luck to you.

[lizzziep in reply to Meatloaf9]

Hi, I've got an appointment with the hygenist but not until mid April, as they are booked up, and they have to wear full PPE too. I do have an electric toothbrush with several settings. I do floss but obviously not well enough at the back as that is where the plaque is which is causing the bleeding, dentist said the aspirin was making the bleeding worse.