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Living With Sjogren's / Why are my cuticles shredding?
« Last post by Maria3667 on Today at 06:05:46 AM »
Does anyone know how to ward of shredding cuticles? First I thought it was vitamine A deficiency but supplementing for 2 weeks has bought no relief. Walking about with band aids on my fingers all the time feels a bit childish and unflattering  :o
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I’m taking the 400 mg dose and I think it’s been four years now. Yes it’s helping me. I will of course ask my rheumatologist the same question when I see her on the 27th, but was hoping someone here would have an answer.
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Living With Sjogren's / Re: Your experience with the lip biopsy procedure
« Last post by Judes on November 13, 2018, 05:32:03 PM »
Well it took about 5 days to start getting feeling back in my lip, and today about 8 days later there is still a knot in my lip that is numb with some weird pulling feeling. I am hoping it will keep getting better, nothing I can't live with though.

I got my results tonight. I had a focus score equal to 2. ENT doc told me anything over 1 is indicative of Sjogrens. She said she is not the right doctor to make the diagnosis or explain it to me that it has to come from my rheumatologist, and also has to coincide with other positive tests like Schirmers.

I already had Schirmer test with results also indicative of Sjogrens of 0 and 2. So I'm thinking with those two tests being positive I will have a confirmed positive diagnosis when I see my rheumy next at the end of December.

I can't find much on the internet about the range of the focus score and it's meaning? Is 2 high? How high does it go, does anyone know? I went in not knowing what I wanted the results to show and I'm still not sure, it's all so overwhelming  and a lot to take in. I guess I wait to see what my rheumy makes of it all now.
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Living With Sjogren's / Re: Blepharitis??
« Last post by bluegardenia on November 13, 2018, 02:13:33 PM »
of course teetree must be diluted!!! the proportion should be one  per cent!!
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Living With Sjogren's / Re: Plaquenil eye toxicity versus macular degeneration
« Last post by Alex on November 13, 2018, 01:57:27 PM »
How long do you taking it? How much 200-400 mg? And most important does it helping you? If helps you and you taking 400 mg you may consider to lower dose to 200...
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Living With Sjogren's / Re: Doxycycline for eyes
« Last post by Sharon on November 13, 2018, 01:38:52 PM »
Thanks Jazz, I will see an eye specialist next week who I know prescribes this for MGD
and see if he will write me an RX for it for the SS eye inflammation.
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Living With Sjogren's / Plaquenil eye toxicity versus macular degeneration
« Last post by Tharrell on November 13, 2018, 09:22:17 AM »
I have a quick question if y’all please.
Just had my 6 month eye check up for plaquinil. My macular degeneration has slowely been progressing, but is not yet alarming. My dad has wet age related macular degeneration I thinks it’s called, so the odds are stacked against me.
Any how. I asked the doctor if it had anything to do with plaquenil and she said no. She said that plaquenil causes the opposite problem, that it causes a thickening of the macula, not thinning.
Yet when I try to look up plaquenil toxicity it says thinning with bulls eye ring seen on the special injected dye screening test? Unless I misunderstood that?

Anyone can explain it to me in simple term? The visual side effects seem to be the same for either condition so that’s no help!
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Living With Sjogren's / Re: M3R autoantibody and IVIG treatment - anyone?
« Last post by Tharrell on November 13, 2018, 09:12:23 AM »
I see tha older publications, 2013 and older, show M3R antibodies correlation in sjogren’s. Yet newer publications, 2016, find no correlation of this antibody as a serum marker or inducing for sjs.

Autoantibodies against the Second Extracellular Loop of M3R Do neither Induce nor Indicate Primary Sjögren’s Syndrome
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0149485

Looks like more studies will have to be done.

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Living With Sjogren's / Re: Blepharitis??
« Last post by araminta on November 13, 2018, 02:11:41 AM »
Mollie - you can google demodex mites - they are always present on our skin and usually present no problem - they wouldn't have come from a warehouse.  I don't know why they sometimes become a problem.
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Living With Sjogren's / Re: Blepharitis??
« Last post by Bigleyj on November 12, 2018, 11:44:20 PM »
Just a suggestion...my optometrist told me to dip a cotton stick in baby shampoo and use it to clean eye lashes while in shower.  Works quite well.

Jo. 😊
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