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canon

Sjogren's symptoms

17 posts in this topic

Hello,

 

It has been a very long time since I have posted though I do drop in once in awhile to browse the forums and site. A good portion of my job requires computer work so my hands do not tolerate extra computer activities. For those who do not know me or remember me I have systemic sclerosis, Raynaud's, hypothyroidism with graves autoantibodies, also sjogren's and a twist with Sweet's syndrome (not quite considered autoimmune as of yet).

 

Anyway for the past year I have developed nasal ulcers which became infected with MRSA, also developed mouth ulcers with some nasty areas in my throat at times and very dry airway and lungs. I have been at my wits end trying to find something to relieve some of these symptoms. At my last pulmonologist appointment I asked if it would be okay to use normal saline nebulizers for these problems and she agreed it might help. Though she added albuterol and mucomist the normal saline is the most effective. Within one week of starting the normal saline nebulizer treatments, the mouth and throat ulcers cleared and have not returned. The thick mucous in my throat is thin enough to cough out now, (sjogren's can cause thick mucous from dryness). My lungs don't feel like they need a drink anymore either. I also breathe the mist in through my nose and the nasal ulcers have improved about 80%. My nose doesn't bleed anymore. The ENT doctor had given me nasal spray with mupirocin ointment for my nasal passages which did not help much. Of course the mupirocin is to help prevent me from getting MRSA again and will be needed as long as I have open ulcers. Needless to say I am no longer at wits end and am so relieved and had to share this with you and how this treatment has improved life for me. It is simple, inexpensive and so helpful. Hope this can help someone with Sjogren's after clearing it with your Doctor first. Oh by the way, the ulcers in my mouth were white and my dentist recomended I see a surgeon for a biopsy. Lucky for me when I went to the surgeon the white spots were gone. No biopsy needed.

 

Big hug to all,

 

Canon


A happy heart is good medicine.

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Hello Canon

 

Hello and welcome back! Thank you for passing on the helpful information. One of the things that makes this forum great is the sharing of experience, you can't beat it.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Canon,

 

Welcome back to these forums and I'm so pleased that you've found something to help with the Sjogren's symptoms and the nasty ulcers in your mouth and that it's improved your quality of life.

 

Do please keep posting and let us know how you're faring. ;)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Canon,

 

I am fairly new to this site as well as to my conditions, your post was very helpful and thank you so much! I am so glad I found this site, so many things were not answered by my doctors, and I did not know that the horrible mucus I get in the back of my throat every night was due to the Sjogren's! I have been taking an antihistamine every night as I thought I was having a nightly allergy attack, :lol:. My sinuses were not happy with that but the mucus is so bad it is hard to sleep. I have a hot line that I can call to talk to the Scleroderma nurse and I will ask her about the saline for my throat. Thanks again for sharing this, it will help me a lot, hopefully :happy-day:

 

:emoticon-hug:

 

Jean

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Hi Jean,

 

Hope you are feeling better and your nurse approved the saline nebulizer for the thick mucous you have in your throat. It has really been helpful for me. Take care and good luck in keeping your symptoms under control. Be careful with allergy medications they can make sjogren symptoms much worse.

 

Big hug,

Judy


A happy heart is good medicine.

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Amanda,

 

Thanks and hope you are managing ok and keeping ahead of your symptoms too. Take care and big hug.

 

Judy


A happy heart is good medicine.

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Joelf,

 

Thank you too for the encouragement. Hope you are managing and keeping ahead.

 

Hugs,

 

Judy


A happy heart is good medicine.

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Thank you for posting- it always helps to have things to try. I'm glad you were able to find this solution.

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Hi

 

Sjogren's symptoms - dryness is there a solution?

 

My teeth have suffered most - lost a few (first confession as a bit ashamed) even though I have regular dental check ups, I clean my teeth regularly and use mouth wash.

 

I have false tears for my eyes.

 

Scleroderma vs Sjogrens not sure on the answer.

 

Gil

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Hi everyone

 

I wanted to say that I did get the spray for my throat, and once I can get past the weird taste and texture, I think it will help. At the moment I use it and gag for about 15 mins LOL! I have a test coming up on Thursday and I have to fast with no liquids or food for 12 hours; it's gonna be a rough night, when my mouth gets dry it causes me to cough terrible, so not looking forward to it. I keep telling myself it will be worth it if they find out what is causing all my abdominal pain.

 

Jean

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Jean,

 

I have the extremely dry mouth & before I had my surgery in December they did say that I could moisten my mouth & lips with water on a sponge or something, it certainly helped me. Why don't you ask if you can do this because it really is awful when your mouth seems to be glued together because it's so dry.

 

Hope you get some answers from the tests on Thursday.

 

Buttons

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Gil, Jean and all of you wonderful people,

 

Sorry for not posting sooner but have not been to the forum for awhile. Had no idea the post was still active.

 

Gil don't feel bad about your teeth, most of us have problems with ours too. Caps and partials if we can and hope for the best. We all deal with things the best we know how.

 

Jean I hope you got the answers you were looking for and they can treat your stomach pain now and that the spray has helped with the mucous in your throat. I managed to get the nose and throat stable, now the eyes are dry again. Already have punctal plugs in and tear eye drops 3-4 times daily. We changed the eye drops to another brand that has more balance.

 

It is wonderful hearing from you all and hope you don't mind the post all in one. Have been resting all day and now sleepless.

 

Have been sick again with frequent infections, swollen axillary, cervical lymph nodes, eye infections, blepharitis and terrible muscle weakness and pain. No cancer detected yet. I am now pretty much back on my feet and feeling much better. Lots of antibiotics then unfortunately had to have a steroid injection. Doing better the past few days. Good doctors. Yah!! Would like to post more often and will as soon as this disease keeps still awhile. The wonderful support I have sustains me. Thank you all so much and when I find another solution you will be the first to know. Take care and thanks again.

 

Hug to you all,

Judy


A happy heart is good medicine.

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Hi Judy,

 

I'm sorry to hear that you haven't been feeling very well again and have had so many unpleasant symptoms. I know eye infections and blepharitis can be really debilitating. However, it does sound as if you're on the mend a little now and feeling better.

 

Do post when you're feeling up to it and let us know how you're faring. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Judy,

 

Ah, what a time you've been having. I hope you soon feel much better and can pop in on the Forums more often. It's always nice to hear from you.

 

Best wishes and some special spoons: :spoon: :spoon: :spoon:


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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