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Old 10-24-2011, 06:27 AM   #1
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New to this

I haven't been officially diagnosed with Sjogrens but I have dry eyes (ophthalmologist confirmed) and arthritis (bone scan confirmed). My rheumatologist has said my symptoms are presenting as a little bit of everything. I'm a female, in my early 20s.

I've got two questions I was hoping someone can help me with.

The first relates to the arthritis. I know it can be a symptom of Sjogren's Syndrome. But how do the doctors know when your arthritis is from primary Sjogren's or secondary Sjogren's to RA/Psoriatic Arthritis?

And my second question is about vaginal dryness. In the past sex has been pretty painful and I spoke to my GP who said it was just anxiety. But I've put two-and-two together and I'm pretty sure it's related to my dry eyes/dry mouth/dry nose. It's quite an embarrassing symptom, especially being in your early 20s and recently single, looking to meet someone new (if you get my drift). I know you can get lubricants, but I was wondering if there are any other options?

Thank you

 
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Old 10-25-2011, 08:48 AM   #2
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Re: New to this

I have secondary sicca. There are tests and diagnosing criteria for primary Sjogren's just as there iare for the other AI's. Check with your Dr, but secondary sicca is treated basically the same as primary, in my experience.
As to your second question, I found that Evoxac, as prescribed by my Dr. really helped me with vaginal dryness as well as with dry mouth. Dry eyes, not so much, so I use drops for that. And as for lubricants, I use olive oil, but I believe it is not reccommended for use with condoms. I believe that there are suppositories for all day relief of dryness as well as immediate use type. Check with your pharmacist for the all day relief type. I would also personally use a lubricant without a lot of perfumes and whatnot. LOL, carry it in your purse or whatever, and if the subject comes up, if you don't want to explain sicca, tell the truth and say that it is for your personal comfort. Check with your gyno or pharmacist for brand information. I gotta give a shout out to pharmacists as a great resource for discreet information involving both RX's and OTC products. I wouldn't have found the dry mouth type toothpastes and mouthwashes without their help.

 
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Old 10-25-2011, 02:47 PM   #3
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Re: New to this

Thanks gdiluca

My rheumatologist isn't really sure at this stage what it is exactly, but with dry eyes, dry mouth and arthritis, to me, that screams Sjogrens (and my rheumatologist has now acknowledged this too)

I don't live in the USA, so I'm not sure if this medication is available here and then if my doctor will prescribe it. Thanks so much for your advice, I'll look in to all of that.

 
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Old 10-26-2011, 06:09 AM   #4
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Re: New to this

In the US and Canada, and I believe Europe, too, Evoxac and pilocarpine are approved for the treatment of Sjogren's both primary and secondary dry mouth. It should be available in NZ. Evoxac is a brand name and I haven't seen it generic yet so may be marketed under a different name where you are and the pilocarpine is the generic name of that drug. And I can believe the anxiety label! I just wanted you to know that proper treatment of ALL of your dryness symptoms will go a long way to making you feel like a woman again. I certainly couldn't believe the difference treatment and symptom management has made to me. I have actually left the house once or twice without a bottle of water in my hand! Good luck and keep your spirits up!

 
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Old 10-26-2011, 01:57 PM   #5
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Re: New to this

Thanks gdiluca

I found it on the Government website, so it's available, but you need special authority-

Special Authority for Subsidy Initial application from any relevant practitioner. Approvals valid for 2 years for applications meeting the following criteria: Either:
1 Patient has to use an unpreserved solution due to an allergy to the preservative; or
2 Patient wears soft contact lenses.

I don't have an allergy to the preservative stuff, but I don't use it. Is it an eye drop? And it helps with other areas of dryness too?

That would be nice! I'm thinking I might make an appointment to see the ophthalmologist again, after my lip biopsy, to trial the plugs. It's just one less thing to worry about then. I'll ask him about this if it's going to help all my dryness!

Thank you =]

 
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Old 10-27-2011, 08:55 AM   #6
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Re: New to this

Evoxac and pilocarpine are capsules or pills. Restasis, in the US, is an eye drop approved for the treatment of dry eyes. I use that as well but have found that it only helps my eyes, plus I need to use Over The Counter drops as well. I think the pilocarpine drops are for paediatric use, rather than adult. In any event, the pill forms, and I have used both medicines, first pilocarpine and now Evoxac and both improved all areas of dryness axcept my eyes. Now keep in mind that I have secondary sicca and each patient reacts differently to different medications. You and your doctor hopefully can find the best treatment plan for you quickly!

 
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Old 10-28-2011, 03:49 AM   #7
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Re: New to this

Thank you. I haven't really spoken to any of the doctors about the vaginal dryness (kind of embarrassing and not a huge problem like the joints/eyes etc). So I'm not sure if they'd be prepared to try me on something other than the plugs or OTC drops. Restasis isn't available here. And I haven't been officially diagnosed, so as far as they're concerned that means my symptoms aren't that significant (that's how it feels anyway). I'm having a lip biopsy done next week (so scared!) so I'm hoping for a positive result, but not expecting much. I'm going to see how my eyes are in the warmer months (they flared up badly when I was in Australia, very hot there). If they're not good, I'll go back to the ophthalmologist and discuss the plugs and other options.

Thanks again

 
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Old 10-28-2011, 05:47 AM   #8
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Re: New to this

Well best wishes for you! I'm not sure that an official diagnosis means all that much as long as they treat the symptoms! Keep us posted.

 
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Old 08-31-2012, 12:26 PM   #9
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Re: New to this

I posted this in another spot... thought it might be good here as well.

Hi, I do not have SS but have other things. I have the most severe case of dry mouth my dentist has ever seen. It is ruining my teeth. He prescribe Evoxac. I have no insurance and this was costing me so much I would not take more than one at night time. I have since added my drug cost up and it $1500 for 3 month supply. I now get 3 of my scripts from Canada (generic) and have cut my cost for 3 months to $500. I get generic cymbalta, generic crestor, and Pilacarpine with is generic for Salagen (sic). I am able to take 3 of them a day and afford them too! I can really tell a different after taking one.

Another thing my dentist advised is to use Xylitol. It comes in gum and mints. (I cant do gum, tmjd) They just came out with Xylimelts. You put one between your gums and cheek at night and it sorta sticks, slowly desolving all night to help with saliva. The other good thing is that it helps cut down the bacteria in your mouth that destroys your teeth. I love these!! Hope some of this helps. T~~
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