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Sjogren's


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#1 betty32506

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Posted 11 May 2009 - 04:38 PM

Recently here there was a thread saying what a long difficult process it is to get a Sjogren's diagnosis. I have blisters in my mouth, mostly the inside of my lips. The dentist's main question was did they come to head. No, but they do hurt. Beyond that he was no help at all.
The Rheumatologist gave me quiet a surprise. Without a second's hesitancy she said Sjogren's.
Betty

#2 betty32506

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Posted 29 May 2009 - 04:31 AM

I want to add a comment to this thread. Diagnosing Sjogren's is usually a complicated process. In my last post I said that I was diagnosed right on the spot with nothing new done.

When my mouth problems started out my entire mouth was so sensitive just about everything really burned it. A bite of pizza from where a piece of pepperoni had been removed was bad. Brushing my teeth was almost out of the question. I had blisters on the inside of my lips and sores otherwise. It doesn't fit the burning mouth syndrome and he had nothing to offer.

As I previously posted the rheumatologist without hesitancy said Sjogren's and prescribed Evoxac. My mouth began slowly to improve. I am now back to using regular toothpaste with only minor discomfort. I had not thought of this connection until now. It appears the doctor knew what this was as the Evoxac is working. It increases the saliva. Unfortunately there are minor side effects that effect my eyes. I think I may stop it for awhile and see if the problem comes back.

I thought this could some on Sjogren's.

Betty

#3 Amanda Thorpe

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Posted 31 May 2009 - 02:21 AM

Hello Betty

What eye problems does the Evoxac cause?

I don't have Sjogren's but there may be others with a similar side effect from the Evoxac.

Take care.
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#4 betty32506

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Posted 31 May 2009 - 05:55 AM

One of the side effects listed for Evoxac is visual disturbances (e.g. blurred vision or changes in depth perception) with night driving or reduced light conditions.

There is an information sheet for Evoxac (Cevimilene) from Center Watch on our Treatments for Sjogren's page under Treatments for Dry Mouth.

I already have these problems and I can see now that it is more noticeable than before. When going from one level of light like outside to a lower level, like entering a darkened room my vision is very slow to adjust. My depth perception has always been bad. That relates mostly when driving. Since that has been a long standing problem I have to really keep that in mind. Fortunately I have always underestimated depth making things look closer than they really are thereby making me be really further away than they are, a minor nuisance.

It is really good to be able to brush my teeth with regular toothpaste, something I could not do before. I may go off it for a while to see how it goes. But it was very slow to clear the sores so it will not be too easy to check.
Also my nose, (had sores there too) has cleared somewhat.
Betty

#5 nan

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Posted 31 May 2009 - 09:29 AM

Betty,
You poor thing! I have Sjogren's too. My main problems have been severely dry mouth and eyes. I too am on Evoxac- so far no eye problems. I still have to use Biotene toothpaste though. I have never experienced the blisters. I have cuts at the corners of my mouth.
Take care,
Nan

#6 betty32506

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Posted 31 May 2009 - 01:37 PM

Nan,
That's tough. At time my mouth was so dry I could not talk without a glass of water. Mine started by being very easily hurt. Bit my jaw and tongue. When I bite my tongue it feels like it is the area where the carotid node is. Pain goes right into the ear.

I looked for a VERY soft tooth brush and finally found one for infants. I used baking soda. Then I found a toothpaste for kids that tasted like bubble gum. Recently I found a one for kids that was more like tooth paste. Suddenly I realized it was all really improved. Now I am using a 'for sensitive teeth' pro enamel.

I don't think I have seen the Biotene. I'll have to check that out. My dentist was of no help at all.
Betty

#7 CraigR

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Posted 01 June 2009 - 08:22 AM

Betty,

You should be able to find Biotene toothpaste and mouthwash at any good drug store. I have always been able to get it at a major discount store. I have found both to be very helpful.

Your rheumtologist should be able to do a Schirmer(sp?) test. It is a simple test where a piece if paper is set just under the lower eyelid. It measures the amount of liquid that it can absorb from the eye. It is a good indicator. Lip biopsies can also be done, though I've never had that.

I take Evoxac before going to bed, since that's when I have the greatest trouble. No side effects noticed.

I also like to keep a glass of water nearby to sip on. Saliva does a lot for keeping the mouth clean. I figure that if I regularly sip water to help clean out my mouth, it should be helpful. That, along with occasional use of the special mouthwash (especially when I wake up with a parched and sore mouth), seem to help reduce inflammation.

Craig

#8 betty32506

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Posted 01 June 2009 - 04:26 PM

I just never looked or knew about Biotin. The problems with the toothpaste is that it burns so I can't use it. But I have concluded that is what makes the mouth feel clean. Bubblegum taste sure doesn't so am happy to be able to use regular ones again.

Having read what a problem diagnosing Sjogren is so difficult I did not think much of the Rheumatologist diagnosing it right off the top like that. Apparently she is correct. :)
Betty

#9 betty32506

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Posted 01 June 2009 - 04:48 PM

I went to my opthamologist today. He said not a problem with the Evosac.
Betty

#10 Sweet

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Posted 01 June 2009 - 06:32 PM

Oh Betty,

I am so sorry. My doctor says I have Sjogren's too, but he based that on the fact that I now have very dry eyes and mouth. Luckily I haven't had any real problems yet. I see the dentist every couple of months and I'm using mouth moisturizers and eye drops. So far so good.
Warm and gentle hugs,

Pamela
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