Mouth Ulcers

[SuekJ]

Morning all,

I have et jak2 + diagnosed 2011 age 57, I’m on aspirin, and anagrelide.

I used to get regular reoccurring mouth ulcers but after cutting out sugar and wheat from my diet they completely abated. Now for some reason they are back with vengeance and I’m losing the will the live! They are HUGE and deep sores that make my cheeks swell out and can occur in any part of my mouth making eating, drinking and speaking impossible. They last for up to 3 weeks and as they start to shrink a new one starts to grow. I have tried so many things including the usual over the counter stuff and mouthwashes. Bicarbonate of soda, salt water, dentagels, and the gp prescribed Lidocaine a local anaesthetic to numb the area so I can sip some soup but it only lasts for 10 minutes and is such agony to apply it’s not worth the bother!

If anybody has any tips that work for them please share! I’m desperate to be pain and discomfort free,

Thank you

[Mazcd Partner MPNVoice]

Hi Sue, how horrible for you, I am so sorry you are in so much pain and discomfort. It might be worth seeing your dentist for some advice. Maz

[francesb]

My clinic give me a mouthwash called Difflam which helps and also warm salt water mouth wash regularly. I don’t know if they’re on the list of side effects for your drug but they are for HU. Good luck.

[SuekJ in reply to francesb]

Thank you, neither of those work for me, still searching for answers!

[cdr_krishnan]

I am sorry to know your plight especially since I have also gone through similar conditions few years back and as such I wish to suggest following :

You may try applying Turmeric powder in the affected locations once or twice in the day and also before going to sleep in the night .While it may not give immediate relief from the pain ,it will help in curing the mouth sores much faster. Turmeric is known to be a good anti inflammatory organic substance .Even consumption of turmeric powder , say one tea spoon a day, combined with a pinch of pepper powder, will be helpful in fighting inflammations .

I have been on H.U for few years before starting with Ruxolitinib, and those days I used to get frequent painful mouth sores and my resolution for that was as mentioned above, which proved very effective.

Wishing you a Godspeed recovery.

[SuekJ in reply to cdr_krishnan]

Thank you very much, I’ll give it a go

[Anag]

Hi Suekj,

Changing my diet got rid of all of that and much more. I was glad to hear it. There is obviously something compromising your immune system. I have only organic toothpaste without any mint or fluoride. I eat no GMOs or packaged foods or milk products except organic Feta from sheep or goats milk. I go rid of all chemical cleansers and cosmetics, shampoos, etc. My whole family is better. Less psoriasis, dermatitis, brainfog gone. At some point, I removed a tooth and got an infection in my jaw! Horrific. 2 ulcers within 2 days any then 100+ white dots along that area and they felt like mouth soars. Yes. I could eat anything but soup and could hardly talk it was so painful. They appeared as soon as aI started the antibiotics. What I did:

1. Took lactobacillus and ate raw sauer Kraut and L-Hlutamine powder to help my gut.

2. I did oil-pulling every morning. 1 tsp coconut oil and 1 drop oregano essential oil mixed and swished that around my mouth and through my teeth for 10 min and spat out into the garbage, else coconut oil hardens and can block your pipes. Real, high quality essential Oregano is anti-viral/bacterial/parasitic/yeast/mold. A drop daily directly in a wart will kill it soon also. I take 2 drop internally (always with a carrier oil) daily when I have a cold or bronchitis. It’s great.

Please avoid anything anticeptic or harsh. It willl just anger your soar.

A clove flower in your mouth near that spot will work antibacterial, antiviral and will numb that area a bit.

Vit C is also great to get rid of free radicals that may be throwing your system off. Please stay on your diet! It’s good! Make sure you are getting enough nutrients.

Stress is also a huge cause of mouth soars. Make sure you do some stress reduction.

I know this can drive us absolutely mad. I hope I may have helped. All the best. Anag

[Wyebird in reply to Anag]

Wow I take my hat off to to AnAg. You really researched everything. I think I’ll print your reply and store it for reference. Thank you

[Anag in reply to Wyebird]

Thank you! I learn a lot and use methods on myself and my family as lab rats. 😂 I never pass on something I’ve not proven on myself. I think if I was 15 years younger, I’d try to make a career in functional medicine. It actually cures people and doesn’t just fight symptoms. Have a great weekend. The sun is finally out in Vienna! Anag

[Cja1956]

Sounds awful. I have not experienced mouth sores but it looks like you got some great advice here. Hope you feel better soon.

[StreetPastor]

Hi Suekj, I was sent an email with your question attached. I was diagnosed with ET about eight years ago. I occasionally get gum disease which is very sore but mouth wash sorts this.

I too am on Anagrelide and Aspirin. May I ask how long you have been taking Anagrelide and how many capsules a week?

Hope you find relief very soon. I will pray for you now x

[SuekJ in reply to StreetPastor]

Hello there. I take 4 x 0.5mg is Anegrlide daily and 1x 75mg of aspirin plus 1 x 500mg of hydroxycarbomide. I was previously on hydroxy 2g a day then I started on Anegrelide last October. I have done some research today and have come to the conclusion that the ulcers are in fact mucositis which are sores caused by chemotherapy drugs. I will have more questions when I go back to see the consultant!

[StreetPastor in reply to SuekJ]

Yes I understand hydroxycarbomide causes ulcers on the legs normally. I wonder is this why they put you on Anagrelide. Hope your sorted soon xxx

[hunter5582]

For more minor mouth ulcers, I used PerioSciences AO Provantage gel with success. Not sure it would help with something more massive. Sounds like a compromised immune system may be part of the issue. The mouth is a very germy place and can be the first sign if immune issues. I have also tried a dental pro-biotic lozenge to try to boost the microbiome in my mouth. Don't know if it really helps, but might be worth a try. All the best to you.

[SuekJ in reply to hunter5582]

Thank you! I have done a lot of research into microbiomes, I will definitely try this! Do you have a name?

[hunter5582 in reply to SuekJ]

I have tried two. can't really say if one is better than the other.

Blis Probiotics Teeth & Gums

smile.amazon.com/gp/product...

GUM PerioBalance

smile.amazon.com/gp/product... not currently available here.

ebay.com/p/GUM-Periobalance... this might work.

Hope this helps

[Wyebird]

How awful for you. I too get mouth ulcers but they are really tiny. Try ‘blue m’. Sounds as if you are an extreme case. Maybe your heamo could change your meds.

Good luck

[Ann16]

I use a dental paste from the dentist and that helps them heal faster. Hope this helps. Ann

[amalekh]

I'm not sure if the honey made them disappear, but worth trying. I used to get them when I was on HU. When I changed to Jakafi, I've started getting them after a couple of months of starting Jakafi, eventually I started taking a spoon of honey on an empty stomach every morning and neither one has shown up since then, I mean since 6 months approx.

Cheers,

Malek.

[amalekh in reply to amalekh]

Forgot to mention:

1- Some people can't tolerate honey on an empty stomach, so check if you're of those beforehand.

2- I keep chewing the honey for about 30 secs before swallowing.

And one request from me, of your gonna try it please update this post on the outcomes and findings.

Cheers,

Malek.