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Old 07-18-2012, 07:48 AM   #1
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I think i have sjorens

Hello everyone! I often come on the thread and just read the comments to get info about this condition. This is very embarrasing of the symptoms i have experience for several yrs. My mouth is always dry i drink on average close to gallon of water a day. I walk with many 32 oz water and i have to calculate when i travel c i have to stop to urinate. I also experience vaginal dryness and im marry so this is definitely a strain to my marriage and my self esteem. Besides lubricant, can they some remedy to help vaginal dryness?

 
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Old 07-18-2012, 08:24 AM   #2
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Re: I think i have sjorens

Depending on your age, if you are close to perimenopause, estrogen cream can help. Otherwise, a water soluble lubricant can help before sex. Put it on in advance to avoid interruption. I like plain old KY jelly-no mess, no perfumes, washes out easily. There is an oral medication that increases secretions of the mucus membranes overall, and this may give you relief with the dry mouth and vagina to some extent. It is Rx, and a rheumatologist usually prescribes this for people with diagnosed Sjogren's. There are blood tests for Sjogren's, but only about 70% of people with it show positive results. A lip biopsy on inside is sometimes done to confirm it, but some Dr's will treat just based on symptoms. You can also get artificial saliva sprays at pharmacy (ask pharmacist) that can help and last longer than just water. The Rx drug is Pilocarpine, taken orally, to increase secretions.

 
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Old 07-18-2012, 05:09 PM   #3
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Re: I think i have sjorens

I was diagnosed with polymyositis in 08 but i have been dealing with the other symptoms before this. Could you tell me the name of the prescription so i can request this to my doctor? This is a hard topic to speak to my doctor about. He is much older and he would probably think i wont suffer something like this. I am 33 and i have been experiencing this since my mid twenties.

 
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Old 07-19-2012, 10:12 AM   #4
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Re: I think i have sjorens

there are OTC suppositories that your pharmacist could recommend. I've been on pilocarpine and that certainly helped with dryness, but I've since gotten worse and am now on Evoxac, another Rx drug used for Sjogren's and have found it to be very effective for vaginal dryness. I even started sweating like a normal person in hot weather!

 
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Old 07-19-2012, 02:53 PM   #5
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Re: I think i have sjorens

I went to my new primary doc and he really listen to me and is running blood work to see if any come back abnormal. I hope i dont have to resort to doing lip biopsy and follow up with a rheumatologist. I know i should have talk to my doc but based on past experience i never spoke to him about it. Hopefully next week he gives me meds to help the dry mouth.

 
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Old 07-19-2012, 02:55 PM   #6
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Re: I think i have sjorens

Also i have tried those OTC suppositories and dislike them. The one that was really good was discontinue. Since then i havent one as good as the one i used.

 
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Old 07-20-2012, 10:36 AM   #7
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Re: I think i have sjorens

Some people will never show positive blood work as the condition can be secondary to something else, in which case a lip biopsy is never performed and the symptoms are just treated.

 
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Old 07-20-2012, 03:11 PM   #8
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Re: I think i have sjorens

My rheumatologist told me that she doesn't do lip biopsies unless there is a need to eliminate another disease as the source of dryness. She says that you're supposed to treat symptoms, so unless you absolutely have to know whether you have sjogrens or something else, there's no need to do a biopsy because you're still going to get treated the same way, especially since you can have complications from the biopsy, including permanent numbness.

 
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Old 07-20-2012, 03:54 PM   #9
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Re: I think i have sjorens

Fantine is right about the risk of not getting feeling back in your lip. I had a lip biopsy when my blood work came back negative for sjogren's, but still showed very high inflammation. I knew what the risk was & was willing to take it, since my symptoms had been dismissed by so many drs for many yrs. I needed to know for sure. My biopsy came back positive, but the bottom half of my lip still feels tingly, like i was just at the dentist. For me, it was worth it to know for sure. Its only been a few weeks, I am hoping I will get feeling back. You need to weigh that decision. I also am on Evoxac, it works better for me than Pilocarpine (Salagen). I sweat now and have more saliva and vaginal moisture. Not to get too graphic, but more saliva can also make sex better.....I hope you get feeling better soon.

Last edited by dltt48; 07-20-2012 at 03:55 PM.

 
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Old 07-21-2012, 01:53 PM   #10
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Re: I think i have sjorens

Since nerves regenerate very slowly, and your biopsy was just a few weeks ago, the feeling will probably return, but it may take a few months to up to a year. If you feel some weird tingling in your biopsy area, it is a good sign the nerves are regenerating.

 
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Old 07-21-2012, 03:58 PM   #11
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Re: I think i have sjorens

Thanks ladybug for the positive thinking. I hope i get feeling back too, but if i don't i'm ok with it. I just want more saliva. This dry swallowing is getting old, even with meds. Hopefully one day they will have a better drug for that. Does anyone else have to take their meds for saliva, in the middle of the night to get back to sleep? I shouldn't complain, at least we have something to help. Before Evoxac i was sleeping on the couch sitting up because i thought i was going to choke to death in my sleep. Its a weird sensation this dryness. Anyone else have a swollen tongue with this disease? I've been battling a swollen tongue since Nov. Drs have no clue. Did all the allergy tests, they all came up negative, but it won't go away..So uncomfortable-i bite it in my sleep alot. The Evoxac helps to soothe it for a while, but then its back to dry, swollen, choking etc... I've read that swollen tongue can come with sjogren's but my rheumy says its not normal for sjogren's, but has no answer. One more question for anyone. When i had my lip biopsy my paratoid glands swelled up huge. When i asked my oral surgeon about it, he seemed bewildered-had no clue, but i looked like a chipmunk for a few weeks. Anyone else have that happen with their lip biopsy? thanks so much....

 
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Old 07-23-2012, 01:18 PM   #12
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Re: I think i have sjorens

Hello i talked to another doctor who i always see and always listen. I told him about my dry mouth. I told him i think i have this disease. He checked my previous lab work and it was normal. He gave the prescription anyway but he gave me pilocarpine instead pf evoxac because there is no generic brand and maybe medicaid may not pay for it. I hope this drug helps me with the vaginal dryness more than the dry mouth. This will certainly help my marriage.

Last edited by shar621; 07-23-2012 at 01:38 PM. Reason: forgot some words

 
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