salagen/ sjogrens personal experiances

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canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/18/2007 8:15 PM (GMT -7)   
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
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2007 11:22 PM (GMT -7)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

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mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/24/2007 10:49 PM (GMT -7)   

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


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 11/26/2007 1:35 PM (GMT -7)   
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.
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/26/2007 9:43 PM (GMT -7)   
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...
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/30/2007 8:25 PM (GMT -7)   
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
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted Yesterday 7:34 PM (GMT -7)   
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
UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 

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