Guest Soaring Eagle

PSS & Sjogren's

54 posts in this topic

Jefa did answer your question to me about the "Magic Mouthwash". I just had mine filled again and the prescription has tobe written out by your doctor. It must contain alot of goodies though as it really works well. I was just at my dentist and I mentioned this to him and he said he had a number of patients with Sjogren's and was going to try to remember to tell them about it as he had never heard of it.

 

When you take it to your pharmacist drop it off and plan on going to pick it up the next day or so as it takes a lot of time for them to mix it up, at least it did when they did mine. It has so many components to it and they have to mix it altogether.

 

I hope this helps.

 

Warm hugs,

 

Peggy

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Thanks, Peggy! I'm making a list of everyone's feedback to take to my doctors and dentist.

 

Soaring Eagle

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Soaring Eagle,

 

This is an interesting thread because I had never heard of candy spray and magic mouthwash. Although I've never been diagnosed with sjogren's, I do notice my eyes are very dry by the end of the day and it's usually worse in the winter with the dry air. I don't however have dry mouth issues.

 

I'm sorry to hear you've had such a rough time since July. I am hoping your doctor comes up with something to give you relief so you can enjoy your aunt's pecan pie. (That's one of my favorite pies too!)

 

I am so glad everyone's given you such great information.

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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They are in our local discount department store in the candy section. We speculated that it could be goodies for halloween. Google has lots of hits but I didn't check any out out.

Betty

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Betty - Thanks for the info, and Razz, thanks for the encouraging and supportive words. My favorite college football team just beat my sister-in-law's alma mater - we've been e-mailing back and forth during the game. She called me before the game started to 1) see how I am doing today and 2) to tell me she was going to pull FOR my team and against her alma mater because she knew a win would make me feel better. After the game I wrote her and told her that I am cured!! No more gastric paresis, no more sjogren's assumptions, and no more systemic sclerosis!! The last 4 hours were fun and much needed!!!

 

Soaring Eagle

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Several days ago I posted about my mouth problems asking if that could be because of the sclero. Several answered and said it could. In addition to the sores my upper lip became so that it showed up when I open my mouth or smile. That gave me some confidence.

 

My first questions were for the dentist. Since the sores never ulcerated he didn't know but said he would look into it and call me. He did call but still didn't know. Then I went to the rheumatologist hoping that would go well. It didn't. She said what I said "didn't make sense". But she gave me a script for Exfoc and dismissed the subject and sent me on my way to get more labs done. 3 weeks later we discussed the labs and said I was in good shape. I have been thinking of making a new post but it sounds applicable to this topic. Any information, what you were told, suggestions or any such would be appreciated.

 

This is basically what I told the rheumatologist. Blisters under my lip, the lips from the outside were very sore to the slightest pressure and my gums are such that I can't properly clean my teeth. I had even bought a toothbrush for infants and toothpaste that was bubblegum taste. Just about everything burns my mouth. Then I started using baking soda but still can't allow the brush to meet the gums. I feel like I bite my tongue at the very root. It really hurts from there for an area about the size of my hand extending from the tongue root to my ear. Looking at an endocrine charts it looks just like the area of parotoid glands. I am tired of eating cottage cheese! She had given me Plaquenil about 6 months prior with instructions to have the eye doctor watch it. I was seeing the eye doctor every couple months for other problems. After about 3 months he sent me to a retina specialist for an opinion. That doctor told me to not use it as my eyes were already compromised. So I stopped taking it. That didn't set well with the rheumatologist and me adding that the Evox was not helping made it worse.

 

I routinely see a pulmonary doctor. He has been more helpful than all the others. He was the one that did the first autoimmune tests and that uncovered several problems. This week I showed him all my labs that I had. He disagreed that my labs showed me in good shape. He said he saw infection in my mouth and a dentist should see that and would be the one to handle that aspect. I have medical insurance but not dental so what's the use in seeing a dentist that has already told me he didn't know about it. And don't know of another dentist that would be better. I see my general practitioner Tuesday and will ask him about an EENT and any other suggestions this post replies.

 

Thanks

Betty

 

"I've been getting sores in the corners of my mouth, and that is symptomatic."

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Soaring Eagle

For a long time I have had dry eyes and at times my mouth would be so dry I could not talk without a drink. For the most part I felt it was medication or alergies and I never had a doctor check it out for anything else.

 

I found nightime tears that come in a small tube to be helpful. It is thick like vasolene so it blurs the vision but works well at night. Also use tears in the daytime. Currently I am not bothered too much.

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That was a computer error. The med was Evoxac.

 

 

"But she gave me a script for Exfoc and dismissed the subject" :huh:

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Hi, Betty (and everyone),

 

I've had a busy week and this is my first chance to log in this week. Thanks for the suggestions, Betty, for managing the dry eyes. I saw an ENT Tuesday and he concurred with my GI doctor's hypothesis that I have Sjogren's. He scoped me and found crusty patches around the cricoid cartilage and said that was a typical finding in Sjogren's. He also said he wanted me to talk to my rheumatologist, which I will do Wednesday, about whether he thought it would be a good idea to do a lip biopsy. I called my brother, who is a physician, and he explained to me that when you have a diagnosed connective tissue disease and develop Sjogren's (by the way, he agrees with my GI doctor, too), it's called Secondary Sjogren's and rarely needs to be confirmed with a lip biopsy. SO, my question to everyone is, "Did you have a lip biopsy to confirm the diagnosis of Sjogren's?

 

Hope everyone is having a good week!

 

Soaring Eagle

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Because I suspected SJogren's first, I was told I had to have a lip biopsy. Didn't sound fun, so I did some reading. There are some support groups like this one out there for people with Sjogrens. They said that the lip biopsy is very painful for many, and there is a slight chance that the oral surgeon doesn't get an actual salivary gland when they do it. I have refused to go through the biopsy, because they don't really plan on doing much to help me with things even if they do diagnose the problem.

 

With Sjogren's there is a higher risk of organ involvement and lymphoma, so a person should be checked for things regularly. What my Rheumatologist said "it is just an inconvenience" and to suck on hard candy. He didn't seem to think I needed to do anything but moisturize my eyes and mouth. No mention of swallowing issues, organ involvement, loss of teeth from sucking on hard candy! (and dryness anywhere you produce moisture of any kind)

 

It is another "not well known" condition that doesn't get the correct action from doctors in my opinion.

 

My eyes are so dry, even with Restasis twice a day, I can hardly read by the end of the day. I can't use many over the counter drops because they irritate my eyes. The kind with the cellulose actually build up crud on my eye lashes that falls into my eyes and makes everything worse. I might be allergic to poly-vinyl which is an ingredient in some eye drops. I have ear plugs made from poly-vinyl that make my ears red and itchy.

 

I am getting some corneal pitting, but so far it isn't bad enough to make a major difference. I really hope I won't need a cornea transplant someday.

 

When I'm outside for a long time, I try to wear my sunglasses which are the kind that go over my regular glasses and fit up against my head. It really helps cut down on the drying of the wind. I was glad to find some that work, because swimming goggles (which come to mind) don't really look all that stylish, and my teenage children would probably disown me rather than go with me anywhere.

 

At a recent local meeting, which I was attending for the first time, someone mentioned that more people actually have Sjogren's than MS. Actually that makes sense. Anyone with RA or other immunilogical issues can get Sjogren's as you mentioned as a secondary issue.

 

I've done more research on this topic than is probably healthy. Lots of luck getting a diagnosis. Even the specialist I saw said that blood markers only show up in 60-70% of people with the disorder, so if you want a definite diagnosis in the USA then you have to submit to the lip biopsy. The USA criteria for diagnosis is much more restrictive than the European criteria.

 

Best wishes.

Mando.

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I was diagnosed with Sjogren's without a lip biopsy.

 

First there was the Schimmer (sp?) test. This is when a tiny piece of paper is hooked in the eye, just under the lower lid. After a set time, it is removed and examined to see how far the eye fluid has soaked into the paper. A very small amount is highly suggestive of Sjogren's.

 

But more specifically, the blood tests for specific antibodies will tell if you have Sjogren's autoantibodies. More than one test is a good idea, since it can be in error.

 

Craig

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I had the lip biopsy and it really wasn't any big deal. It did come back positive for Sjogren's. I remember when my rheumatologist doctor asked if I had Sjogren's and I had no idea what it was. She asked if I was dry and I said yes but that I didn't drink enough water. Then she examined me and she was amazed at just how dry I was and that I my Sjogren's was really bad. Like I said, until all of this started I never even knew what it was, just like the scleroderma or the raynaud's. Now I have 6 different autoimmune diseases and am considred an autoimmune disaster.

 

Warm hugs,

 

Peggy

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Mando, Sounds like you have done a lot of reading and learning through other channels. Thanks for sharing your experiences and what you have learned. Today started out not too bad once I got up and drank some gatorade, but then went downhill. I teach two 2-hr classes on Thursdays. The first class I showed a video and discussed it briefly, then let them go. The 2nd class met for about an hour. SO FRUSTRATING!! It sounds like a lot of you are taking Evoxac. What is the purpose of the Evoxac?

 

Soaring Eagle

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Craig & Peggy - How long after being diagnosed with Scleroderma were you diagnosed with the Sjogren's?

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I developed substantial Sjogren's about 20 years after my first scleroderma (CREST) symptoms.

 

Evoxac is a cholinergic agonist which is supposed to increase the flow from salivary glands, tear ducts etc. I take it, though it seems to have very little effect. Some people report great relief from dryness. There is a similar, older drug called "Salagen" which is said to have less effect.

 

Craig

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