Mucositis

[janetfmauk]

I have Systemic Sclerosis (no skin involvement- all internal), I also have Sjogrens. After almost 3 years of a permanently sore mouth I have a diagnosis of Mucositis - I do NOT have cancer nor have I had chemotherapy or radiotherapy. Everything I have found so far is that it is caused as a side effect for treatment for cancer. Has anyone else got this problem and if so how do you manage it. Gelclair has been offered as something to use but I see it s expensive to buy. Any suggestions would be welcome.

[Hidden]

Hi there. I have primary Sjögren’s rather than Scleroderma but I looked up Mucositis and, as you say, it does seem to be the outcome of cancer treatments as far as any information I can find goes. Is it possible that this is a manifestation of your Sjögren’s or Scleroderma rather than Mucositis perhaps?

My Sjögren’s mainly affects affects my nerves although I have a degree of Sicca - mostly in my eyes. My mouth is often very painful but this is due to small fibre neuropathy rather than anything visible.

The trouble is that these non classic presentations of connective tissue diseases often seem to confound many specialists.

Isn’t it possible to get this gelclair on prescription? Or perhaps you aren’t in the UK?

I can relate to pain in the mouth at least and your problem sounds horrible - all I can offer my sympathy.

[janetfmauk in reply to Hidden]

Thanks Twitchy,

I have been to a Sjogrens specialist and London and she didn't seem to be able to understand/give the soreness a name. Before the result of the biopsy I had on my tongue one consultant thought it was aggressive Lichen Planus but the one I saw yesterday said it wasn't. The problem I had the biopsy for turned out to be a mild infection but it lasted many weeks. The consultant yesterday said there is a bit of Lichen Planus and I have some atrophy in my mouth and de-papilation on my tongue. I go to my dentist today and ask him his thoughts in it.

[Hidden in reply to janetfmauk]

Oh dear sounds all too familiar to me- I’ve got a head cold which seems to have triggered either an abcess-in-waiting in one of my old root canals or Trigeminal neuralgia or maybe just my TMJ or a parotid infection- seeing my dentist in an hour and thinking he will be out of his depth but what can I do? Scream in pain can’t open my mouth!best of luck with yours 🤞xx

[Hidden in reply to janetfmauk]

I’m sure you already have thought about this but just in case it’s helpful I’ve attached two links for your possible interest: mayoclinic.org/diseases-con...

hopkinssjogrens.org/disease...

[janetfmauk]

Thanks for the references Twitchy. I have looked at Burning Mouth before but it doesn't fit for me I have actual sores in my mouth and I wake up in the night with my mouth from sore to very sore particularly the tip of my tongue.As for the nerve damage aspect it doesn't seem to fit and I don't have the problems that would fit apart from in my mouth. I do have Fibromyalgia as well but even there haven't got the bad sensitivity that some people have.

I have gong to the dentist to get a mouth guard this afternoon to try and protect my teeth and possibly my tongue. My teeth are in a very bad state and we suspect I will struggle with dentures so the mouth guard will help us know what may be possible.

Hope you go on OK at the dentist.

[Hidden]

gelclair.co.uk/gelclair/en/...

I have a feeling I had a sample a few years ago. I don't know whether this is still active. I am going to try it!

[Hidden in reply to Hidden]

I have Mucous Membrane Pemphigoid [MMP] which affects my mouth, skin & eyes. It can involve any mucous membrane in the body. I was told 30 + years ago that I probably had Sjogren’s because of my dry eyes. It is only recently that it was actually diagnosed & is causing more problems.

I use Difflam Oral Rinse, which I get on prescription. It helps make things more comfortable, by numbing my mouth. I am also on oral steroids for the MMP.

I have an appt in the Dental Hospital next week, with the Hygienists, I was going to ask them what to use for the dryness.

I am sure Gelclair will be available on prescription. I was just reading about it on

drugs.com/cdi/gelclair.html

Which Specialists do you see? I was reading that the Eastman is good for Sjogren’s.

[janetfmauk]

Thanks, the consultant I saw in the Oral dept of Preston Hospital diagnosed the Mucocitis and requested some samples which I have received and tried. The Gelclair helped with most of my mouth apart from part of my tongue which has been a problem for a long time and triggered the biopsy. My dentist has looked into prescribing Gelclair but is not allowed to so I need speak to my GP. However the information from Alliance Healthcare states that it can only be prescribed for 4 weeks.

I cannot use Difflam even diluted as I find it too painful and steroid tablets did not touch it.

I have been going to a consultant at the Dental Hospital of the London Hospital for the Sjogrens but will not go back unless I feel it could be beneficial.