Mouth Ulcers

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Mouth Ulcers

Postby chris » 12 Oct 2015 12:48

Hi All

Thought I would do a post on this vexed subject to share the benefit of my experience and, most importantly, some possible solutions!

Like many of us with low white cells, I have found that one of the real niggles of my particular type of MDS has been frequent and long- lasting mouth ulcers. It seems so pathetic to be moaning about them when others have far more challenging bothersome symptoms but they do get me down and really spoil my enjoyment of eating when the pain sends me through the roof! I had a huge blighter one year in holiday in Italy which really got me down! Fortunately, eating lots of Italian Gelato seemed to numb and freeze the pain!!

Anyway, the reason for posting is that I have found some things which have really helped which I wanted to share in case they can help others.

The first thing was finding a website all about mouth ulcers!! Do have a mooch around the site as it's very helpful.

Here it is!

http://www.mouthulcers.org/

There is a shop where you can buy products which help. Some of the products you can buy elsewhere over the counter.
http://www.mouthulcers.co.uk/mouth-ulcer-products-help#.VhucjfnF-lI

What I have found which has really helped me is this. Some toothpastes (most it seems!) contain quite harsh detergents - mainly sodium lauryl sulphate but there are others. If you are prone to ulcers this can either cause or aggravate ulcers. It is quite difficult to find toothpastes which do not contain some of these products. The site sells a toothpaste called Squigle. Since I started using this in June I have noted from my diary that I have had half the incidence of ulcers I had before and that the ulcers when they do appear last, on average,4-5 days less!! For me this is a huge result. I also use something called Gengigel (can get from Boots and other chemists) to put on on the ulcer at the very first sign - this is important before they become huge craters! And a paste called Kenacort which seems to be very effective if they do get big!

I hope that somebody finds this helpful as I know it's something that many of us get --particularly people on Azacitidine as well as those starting on chemo for stem cell transplant. As ever check with your clinicians before using.

Kind regards to all

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: Mouth Ulcers

Postby Russell » 14 Oct 2015 17:55

Useful stuff! Have posted on MDS Twitter page :)
[color=#0000BF]Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Mouth Ulcers

Postby chris » 14 Oct 2015 19:52

Thanks a lot, Russell. If I can help somebody...........!!!!!

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
Posts: 73
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Mouth Ulcers

Postby MollyP » 19 Oct 2015 22:36

Hi Chris
Thanks for posting your findings. Anything that worsens your general health makes it harder to deal with any major Ill health you suffer with. I personally find things that are located in the head, toothache, headache, sore mouth, earache are all difficult to ignore and get you down far more than perhaps an arthritic knee or toe etc.
my husband psoriasis is worse when it's sore on his face. We are now facing in depth blood tests based around the state of his psoriasis to see if there is a link to his MDS. It will be interesting to know the results but I think we will have to do at least a year of tests. I am trying to explain this to friends and relative using the following, what came first the chicken or the egg, v what came first the MDS or the psoriasis.
I am interested in the immune health levels versus state of MDS. I hope you are generally well inspite of your MDS.
Best wishes
Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
red
Posts: 67
Joined: 22 May 2013 14:25
Contact:

Re: Mouth Ulcers

Postby red » 24 Jan 2016 19:41

Thanks for the tips Chris. My Dentist recommend Gengigell about a month ago, it works like magic I suffer from blistering in my mouth because of my EB (Epidermolysis Bullosa), and now ulcers too from my MDS
Winnie (red)
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living

Return to “My experiences”

Who is online

Users browsing this forum: No registered users and 1 guest