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Helen

Dry throat

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Hi All

 

I have just come from a sclero support group meeting. One of the ladies has a very dry throat. Her doctor told her to drink water, but it is getting a lot worse and has now gone down as far as her chest. He doesn't seem to want to do anything for her. I am trying to talk her into changing doctors.

 

I told her I would ask if anyone here has this problem and have they had any treatment that helps.

 

The only treatment she has is a medication for Raynauds and that doesn't seem to be helping her with that problem.

 

Thanks in advance,

 

Helen

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I'm just guessing here, but it could be Sjogren's disease. With Sjogren's you don't produce saliva or produce very little and usually have dry throat, mouth and dry eyes. Do her eyes water a lot? Some people think if your eyes are watery you don't have dry eyes but watery eyes are actually a thing your body does in an emergency to protect your eyes from getting damaged because they are extremely dry. The easiest thing she could do is get an eye test that tests the moisture level in her eyes. She could do a lip biopsy but not necessary(because it's painful)if eye test is positive for dry eyes. The only thing that I have found to work for my dry throat and mouth is Pilocarpine (brand name Salagen).

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Hi Helen,

Regarding your friend's problem, I would think (and remember I am not a medical person) that a visit to a Rheumatologist would be a sensible thing.

 

I personally have Sjogren's Syndrome as well as CREST and I believe it is not at all unusual for people to have more than one disorder. My Sjogren's started with a dry mouth and sometimes I get a very dry throat. I have a friend who has Primary Sjogren's and she has very dry lungs as well.

 

On the other hand there is not much that can be done for Sjogren's, as far as I know, apart from sipping water all day and night, using eye drops, chewing medicated gum and being very careful about dental hygiene. The modern trend to carry a sippy bottle of water with you is a blessing if you have Sjogren's because nobody thinks you are odd when you whip it out of your bag and take a sip. I find that talking a lot, like when you are in an interesting conversation, can be very difficult because my mouth will go dry and I can hardly get the words out, and next thing I have to cough and that doesn't help either.

 

Some doctors seem to be reluctant to identify a problem if there is no real therapy, but I think I would rather know if and what some symptom means, then I can decide for myself what to do about it.

 

Best wishes to your friend.

 

Judyt

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Hi Helen,

 

For what it is worth, my pulmonologist suggested an inhaled steroid to moisten my throat and "tubes." I haven't tried it and I haven't read anything about it, but it might be worth your friend asking if this might be an option for her.

 

Your support group sounds great! It's nice of you to check into this for your friend. Is she on the internet? We'd love to welcome her and your other sclero-friends to our online support group too.

 

Best wishes,


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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I developed bad sores and sensitivty in my mouth. The dentist should have known but didn't. The Rheumatologist diagnosed Sjogrens and prescribed Evoxac. It took some time but cleared up. I changed dentists and he gave me samples of Biotene products. I keep a very small bottle of the mouth wash with me and a one drop touch does a lot but is not enough to require spitting. A small amount on your tooth brush with regular tooth paste helps. I don't like their tooth paste.

Betty

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Thanks for all your replies. We have told her about Biotene products, but I think because the lower part of her throat is affected they won't work that well. She did visit a Rheumatologist (I'm not sure how long ago) and he told her to come back in 10 years. Where we live we only have one visiting rheumatologist and if we want to see a different one we have to travel 700kms.

 

I have given the group members the name of this site, but I think only one uses the internet. A couple of them were going to get their husbands to check it out for them.

 

I will pass your advice on to her.

 

Best wishes

 

Helen

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When I went to restock my Biotene products, I discovered they are making chewing gum now. I don't know if it's new or not. I haven't tried it yet, but it would seem that it would help by the chewing motion stimulating some saliva flow (maybe!) and then the product itself moistening the mouth. Here's hoping!


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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Hi,

 

Yes Jeannie I have found Biotene chewing gum to be a good product . I used it a lot for a year or two but lately I have been using my water bottle more. No particular reason why I changed my habits I just ran out of the gum and kept forgetting to order more. It is a bit expensive to buy from the pharmacy, but I was lucky enough to have a dentist who could see the need and would order it in for me and I only paid what it cost them.

 

I have the mouthwash too and the good thing about that, is that it is mild compared with other products which have a bit of a bite to them. In my case the Sjogrens makes me very sensitive to anything even the slightest bit spicy - I can't even cope with ginger beer any more.

 

Warm hugs from downunder

Judyt

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