1. < Autoimmune Diseases

I have Sjogrens and dryness is progressively getting worse.

Posted by dunbun13 @dunbun13, Jan 30 11:41pm

My question ….. is anyone here taking Pilocarpane. I would like to know about this medication. Trying to get more knowledge before asking the Dr. About it.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

sbtheplumber1 | @sbtheplumber1 | Feb 9 7:31pm
In reply to @larak "The dry eyes is the worst for me. And I've developed atopic dermatitis and am allergic..." + (show)
@larak

The dry eyes is the worst for me. And I've developed atopic dermatitis and am allergic to propylene glycol! (In the majority of eye drops. 🤣)

OptiFree PF works briefly for me. I've got to find heavier-duty drops for evening.

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Have you tried Refresh Optive Gel drops? I don’t see no propylene glycol in them! I get mine at Walmart . I use them before bed

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2 replies
dunbun13 | @dunbun13 | Feb 9 10:42pm
In reply to @sbtheplumber1 "Have you tried Refresh Optive Gel drops? I don’t see no propylene glycol in them! I..." + (show)
@sbtheplumber1

Have you tried Refresh Optive Gel drops? I don’t see no propylene glycol in them! I get mine at Walmart . I use them before bed

Jump to this post

Yes, I have tried those. I use eye drops around 5 times in a 24 hour period. I am going to a new Rheumatologist soon, and doing some research on prescription meds for Sojgrens. Thanks for all the advice it really helps.

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dunbun13 | @dunbun13 | Feb 9 10:49pm
In reply to @cpd54 "Have you tried Oasis PF drops?" + (show)
@cpd54

Have you tried Oasis PF drops?

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No, where do I get them?

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1 reply
cpd54 | @cpd54 | Feb 10 5:52am
In reply to @dunbun13 "No, where do I get them?" + (show)
@dunbun13

No, where do I get them?

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I order from Amazon.

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suetex | @suetex | Feb 10 10:45am

As a fellow Sjogren's Soldier, are all of you on Hydroxychloroquin? My dry eye and mouth were pretty bad but eventually it did help. Took about 6 weeks. It has not help my Small Fiber Neuropathy, 'though. I need bigger guns for that.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 10 7:26pm

Have you had a chance to use this for information and guidence? My sister finds it very helpful.
https://www.sjogrensadvocate.com/

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ladysullivan22 | @ladysullivan22 | Feb 10 7:48pm

I was in the hospital for 32 days due to MG Crisis. I'm on CellCept and Immuno-Gammaglobulin infusions every 3 weeks. At 80 yrs of age, it's tough! Vvgart & new meds are out of reach for most people. Also Sjögren's Syndrome which is not managed. Hopefully someone has a suggestion or two.

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ladysullivan22 | @ladysullivan22 | Feb 10 9:56pm
In reply to @mollyquilter "You can get a blood test to find out, although they are not 100% reliable. If..." + (show)
@mollyquilter

You can get a blood test to find out, although they are not 100% reliable. If you have the symptoms, you have Sjogrens; my mother had it and 2 sisters and myself have symptoms of it. My symptoms are Burning Tongue (look up the picture/chart of that on the Mayo Clinic chart of tongue pictures. Along with that we have Burning Vulva, Dry Eyes and Dry Mouth. Amitriptyline at night gets rid of the burning vulva part and I use Thera Tears (my eye dr.'s choice) for day and the nighttime ones before bed. OraCoat's Xylimelts keeps the dry mouth under control at night.

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Your reply is spot on! I thought I was the only one suffering from a Burning Tongue!! The dry mouth from Sjögren's is almost constant! Mornings are worst! 😝 Eyes open & stay that way till I put drops in. I use Oragel to add moisture, sugar-free mints and now on CellCept which helps create some Saliva. Anything you do is only a band-aid because you have to continue forever! I wish you much success on this MG journey! I'm riding along for more advice & suggestions!

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hinkan55 | @hinkan55 | Feb 11 6:45am
In reply to @suetex "As a fellow Sjogren's Soldier, are all of you on Hydroxychloroquin? My dry eye and mouth..." + (show)
@suetex

As a fellow Sjogren's Soldier, are all of you on Hydroxychloroquin? My dry eye and mouth were pretty bad but eventually it did help. Took about 6 weeks. It has not help my Small Fiber Neuropathy, 'though. I need bigger guns for that.

Jump to this post

I take Evoxac caps 3x/day and Cyclosporine Ophthalmic drops 2x/day and Refresh Tears as needed. I’ve been on these for 15 years.

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Lara K | @larak | Feb 12 2:35pm
In reply to @sbtheplumber1 "Have you tried Refresh Optive Gel drops? I don’t see no propylene glycol in them! I..." + (show)
@sbtheplumber1

Have you tried Refresh Optive Gel drops? I don’t see no propylene glycol in them! I get mine at Walmart . I use them before bed

Jump to this post

I just ordered some from Amazon. 🙂

I notice they have more active ingredient than some other Refresh options.

My eye doc suggested ointment at night, but I wear contacts during the day. You're really not supposed to use petroleum jelly with contacts. LOL

I am just hanging on for the day when I can get cataract surgery. Both my parents did and now they can see! :-O

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