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Elvis

Mouth problem and Scleroderma

34 posts in this topic

Hi,

 

I've had a blister in my mouth for roughly six months maybe longer. It isn't painful and it has got a little bigger. My dentist has referred me to my local hospital and I have an appointment in September for this. Does anyone else have this problem or know if this is a symptom of scleroderma?

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Hello Caz

 

There are many possible causes of the blister, have a look at mouth sores from the Merck manual and MedlinePlus which states possible causes such as:

 

•Infection (such as hand-foot-mouth disease)

•Autoimmune disorders (including systemic lupus erythematosus)

•Bleeding disorders

•Malignancy(cancer)

•Immunosuppression (that is, when your immune system is weakened -- for example, if you have AIDS or are receiving medication after a transplant)

 

In other words there are a number of possibilities. Please let us know how you get on with the doctor.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks Amanda, I will let you know how I get on. I have an appointment in September for Oral Doctor but I have an appointment for rheumatologist this week.

 

Caz

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Just an update after my Rheumatology app on Thursday. I've been put on steroids for a month to reduce the inflammation in my joints/muscles. I have to go back in a month to see how I've got on and to talk about long term treatment. They were pleased that I'd been referred to maxillo facial for my mouth blister because that's what they'd have done, so will have to wait to see what they say in September.

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Hi Caz,

 

We also have a page here on Mouth Sores and it lists even more causes, including toothpastes and mouthwashes! Who would have thought?

 

I have a friend here in Denver who also has scleroderma and she has a lot of mouth issues, including a recent prolonged bout of mouth sores. I don't get actual blisters, but I get very tender areas that feel as if they were bruised. My tongue also gets very sore. I'd guess that if the scleroderma hasn't actually caused the problems, it's surely predisposed us to them. I try to be careful about mechanical irritation to my mouth like very hot/cold foods, very spicy things, hard things like raw carrots, and anything sharp like crisps (I miss those salt and vinegar crisps a lot~) and get the additional benefit of making my GI tract happy too.

 

Let us know how you get on, OK?


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Caz

 

I'm glad you're going back in a month rather than having to wait months and that they're going to talk about long term options when you do.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,just wanted to let you know that I have been put onto Plaquinell for long term treatment of Scleroderma.Hoping that this works.As for the mouth blister I have, well the consulant is pretty sure it's a blocked saliva gland( i have to have a scan and biospy to confirm this).He's wondering if I have overlap with Sjogrens syndrome so he will contact Rheumatologist to ask his opinion.

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Hello Caz

 

I'm glad you've got a potential explanation and treatment starting. Let us know how you get on.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,just wanted to give you an update on my mouth problem. Had a silogram xray and it showed that I'd had an infected Saliva gland because of a saliva stone. the stone has gone but the tube leading to the gland has been infected for sometime as well and is now completely blocked.The consultant says this is related to lack of saliva because of Scleroderma.I will have to have the saliva gland removed and they will hopefully operate within 4-6 weeks.

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Hi Caz

 

I'm glad to hear that you've managed to get a diagnosis on the problem with your salivary gland.

 

At least now you have a time scale to work on and I do hope your operation will be very successful and you won't have any further problems. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Caz

 

I'm glad you got a diagnosis and planned treatment. I hope that the surgery is quick as is the recovery.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Caz,

 

We've had some other members with this problem who've had the surgery. It's worked out well for them - hope it does for you too!

 

Let us know how it goes, OK?

 

Hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thanks Jeannie, having the operation soon,

will be glad to get the operation over with, good to hear it's been successful for others.

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Hi,just wanted to update this original post.

 

I now have the same problems with the other saliva gland; gotta go back in April to see consultant to see what treatment they will offer.

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Hello Caz

 

Oh I am sorry that the problem has come back albeit in the other gland. Please let us know what happens and did you have the surgery on the other one?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,I have had one saliva gland out.Going back in mid April to see what they are thinking of doing with the other one.

 

Will keep you posted.

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Well,have just seen the consultant about my saliva gland. He is gonna send me to have an ultrasound and silogram but he feels that I will almost def have to have my left saliva gland removed (right one removed in Dec 2010)

Will let you know results etc when I get them.

 

take care.xx

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Hi Caz,

 

I'm sorry to hear that you've probably got to have the other salivery gland removed. However, hopefully that will sort the problem and you shouldn't get any more trouble with them.

 

Do let us know your results when you get them. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,just an update on my saliva gland. I do need the other submandular saliva gland removed.This will be sometime in August hopefully.I am having more problems with this one as it regularly gets infected and causes me alot of pain so I'll be glad to get rid of this one! take care

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Hello Caz

 

I'm sorry that this problem has come back albeit in the other gland. At least you know you'll soon get permanent relief!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi ,just an update on this post.

 

I had my right submandibular gland taken out in December 2010 and I had my left one out in July 2011. When they did a biopsy on the last gland they said that I had secondary Sjogren's (I still can't say Sjogren's properly!)

 

The Maxillo Facial department wants to keep an eye on me as all my saliva glands were inflamed at my last appointment.

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I'm sorry you have had to have both of your submandibular glands removed. Here are some warm hugs for you:

:emoticons-group-hug:

It is pronounced "show grins". Like it is something to smile about? :emoticon-dont-know:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Caz,

 

Sorry to hear that you did have to have the other submandibular gland removed but hopefully now the problem will be resolved.

 

Never mind if you can't pronounce "Sjogrens"; I couldn't pronounce "Scleroderma" when I was first diagnosed and as for spelling it.......!! ;) :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Elvis

 

I hope getting rid of the glands lessens your problems! When I was first diagnosed with scleroderma systemic sclerosis I had to write it down for my husband so he could remember what it was when people aksed what I had been diagnosed with! You get introduced to so many weird 'n' wacky words to pronounce it's almost like learning a new language!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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