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Elvis

Mouth problem and Scleroderma

34 posts in this topic

Just an update on my mouth problems. Having problems with repeated infection in my Parotid saliva glands,throat infections and oral thrush. I have an ultrasound tomorrow on my neck so I'm hoping it can tell me what is going on. I feel that secondary Sjogrens symptoms have increased-now I have to use artificial tears several times a day and my skin has got much much drier.

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Hello Elvis

 

I'm sorry your symptoms are worsening and hope the ultrasound comes up with some useful information. I know a few people with Sjogren's Syndrome and it's no fun to live with what with artificial tears and saliva, you have my sympathy for sure.

 

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 Elvis,

 

I am sorry to hear that your mouth problems seem to have worsened. Thankfully, I don't suffer with Sjogren's but like Amanda, I do know of a few people who unfortunately do and it sounds really horrible and unpleasant.

 

I do hope that having the ultrasound will enable your consultant to suggest something to help with your symptoms and make things a little more comfortable for you.

 

Best wishes,


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 Elvis

 

I read with interest about your mouth ulcer; you may have posted this a long time ago but I haven't been logging in for a while. Happened to me to, had a biopsy done, and found to have lichen planus in the mouth, which is common in immune deficient diseases such as Scleroderma, ask to have it checked out as there is a lot that can help. I attend Prof. Porter's clinic at Eastman Dental Hospital, a lovely man who has a special interest in Scleroderma. I don't know where you live but you can ask for a referral from your dentist?

 

Food for thought!

 

Hannie

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Hello Hannie

 

Thank you so much for this post because prior to it we didn't know that there was a scleroderma expert at the Eastman Dental Clinic, let alone his name and demeanour. This is so helpful!

 

May I ask how you ended up at this dental hospital, including who referred you?

 

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 Hannie,

 

Welcome to these forums!

 

I'm very pleased to hear that you're receiving excellent treatment for lichen plantus from the Eastman Dental Clinic and that you have a knowledgable dental consultant dealing with you.

 

Do please keep posting and let us know how you're getting on.

 

Kind regards,


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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Just an update on my saliva glands and Sjogrens.

 

Infections (usually in parotid glands) have settled down. I still get the odd one though. Under the care of Maxillo Facial and Eye Hospital to manage the symptoms.

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Hi Elvis,

 

Thanks for giving us your update.

 

I'm very pleased to hear that the infections in your parotid glands have settled down and I do hope that the occasional one will not be too troublesome.

 

Kind regards, 


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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