Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Mouth problem and Scleroderma


  • Please log in to reply
33 replies to this topic

#1 Elvis

Elvis

    Senior Bronze Member

  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 01 August 2010 - 12:40 AM

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?

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 01 August 2010 - 07:11 AM

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)

#3 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 03 August 2010 - 04:22 AM

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

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 03 August 2010 - 06:46 AM

Please keep us updated on both!

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)

#5 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 07 August 2010 - 03:26 AM

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.

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 07 August 2010 - 04:27 AM

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

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 07 August 2010 - 06:00 AM

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)

#8 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 29 September 2010 - 10:39 AM

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.

#9 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 30 September 2010 - 06:59 AM

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)

#10 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 03 November 2010 - 11:13 AM

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.

#11 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 04 November 2010 - 12:26 AM

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)


#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 04 November 2010 - 09:44 AM

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)

#13 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 11 November 2010 - 12:53 PM

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

#14 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 08 December 2010 - 10:00 AM

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

#15 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 10 March 2011 - 08:04 AM

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.

#16 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 March 2011 - 05:57 PM

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)

#17 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 24 March 2011 - 05:20 PM

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.

#18 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 12 April 2011 - 06:09 AM

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

#19 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 12 April 2011 - 08:03 AM

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)


#20 Elvis

Elvis

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts
  • Location:Hampshire

Posted 16 June 2011 - 05:50 PM

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