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salagen/ sjogrens personal experiances

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Posted 11/19/2007 3:15 AM (GMT 0)
Hi everyone,

So it looks like my dry mouth is likely sjogrens. Thanks to the pain in my paratoid gland not swollen just pain. I am wondering if anyone here as taken salagen ( we can't get exovac in CDA) if so did it work for you? How much relief did you get once you took the pill? I am reading where people get about 1 hours worth of relief and 40 minutes of it was sweating.

Anything you can add would be appreciated I am having a hard time coming to terms with this dx for me it's so much harder the the lupus one..

Angela

Posted 11/19/2007 6:22 AM (GMT 0)
Hi Angela, I take the generic version, Pilocarpin. I haven't experienced the sweating. I do get increased saliva, but my dry mouth is not extreme and I haven't experienced the damage to my tongue and mouth that you have. My new rheumy is looking into sjogren's and I have some blood work pending and a schirmer's test in March, but he is treating the dry mouth regardless of the dx. I took this med for almost two years and then didn't need it for several months. I'm just back on it this week. The saliva is a bit more watery than normal saliva, but it feels good to have some moisture secreting in there. I can take it up to four times a day and it works w/i about half hour of taking it. I haven't noticed any side affects though. The best plus, for me, was better dental check ups. I hadn't realized that there was a relationship between the extreme plaque build up and the dry mouth. The dry mouth came on so gradually that I didn't even realize it. The doctor told me I had dry mouth. Next dental exam, everything was better than usual. Lower numbers for the pockets and way less plaque. The dentist was impressed. I hope this helps. And I'm sending you a pot of hot tea!! You sound just miserable. I know its difficult to have another dx added to your list . . . we just learn how to cope and then another domino falls. But I think more here have sjogren's than not. Sorry sis. Blessings!
Posted 11/25/2007 5:49 AM (GMT 0)

Sjogren's has really dried my mouth out. I see my rheumy again next month for a follow up on labs she ordered. They aren't all back but the Sjogrens" SSA and SSb are back. The numbers have increased since the last time I had them drawn. Normal numbers are 0-99 and mine are 1220 for the a and 530 for the B. I see my rheumy again in dec 14 and I'm going to ask her about it. I must need something new to tak.

 I see her again on 15 or e3d. Keepus updated and take care. YOu are  in my thougths and prayers.

                                                 Babs

  Hang in htere and take care. Ou are i

Posted 11/26/2007 8:35 PM (GMT 0)
Works great for me. I did run out and figured what the heck and man I wanted that stuff back fast. Very bad dry mouth.
Posted 11/27/2007 4:43 AM (GMT 0)
Thanks for the feedback everyone I guess I will try it and see. I am just not looking forward to the sweating. I know it may sound trivial but I already sweat enough...
Posted Yesterday 3:25 AM (GMT 0)
Wow,

  I just noticed my post on 11/24.....alot of typo's! It was late...thats my excuse...lol.

  Angela, I hope you are getting some relief by now. Take care and keep us updated.

                                                                Babs

Posted 12/5/2007 2:34 AM (GMT 0)
Hippi,

Let me know what your rhummy says about your "dryness" I am curious. I bought a product at walmart for 3.00 called oasis mouth spray it's AWESOME it's purse size and kind of minty but not real overpowering it works great espeically if I wake up in the middle of the night

Angela

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