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Author Topic: Sjogren's advice  (Read 810 times)

Pippa52

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Sjogren's advice
« on: October 11, 2022, 09:48:17 AM »

Hi All, I have been referred to a consultant as my dentist and Dr think I more than likely have Sjogrens.  Could anyone give me some advice as to the best eye drops to use for this until I get to see the Consultant. Also any other tips on how to manage it - dry mouth is not great and have the most vile metallic taste all the time.  Am keeping well hydrated.  Many thanks in advance.x
« Last Edit: October 11, 2022, 09:52:00 AM by Pippa52 »
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Marchlove

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Re: Sjogren's advice
« Reply #1 on: October 11, 2022, 10:06:26 AM »

Hi Pippa

You might be interested in this.
Are you taking testosterone?

https://www.womensinternational.com/blog/sjogrens-syndrome/

M x
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Wrensong

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Re: Sjogren's advice
« Reply #2 on: October 11, 2022, 10:30:51 AM »

Hi pippa52, I've also been investigated for Sjogren's, with very dry eyes, mouth, nose, skin, etc.  Worse since BSO a few years ago which led me to suspect the drop in testosterone might be implicated.  I researched & came across articles like the one Marchlove has helpfully posted.  I asked to start T & found it really helped, especially improving dryness in mouth, nose & eyes.

I've gone through a range of prescription eye drops over many years but those I use now are by far the best: Optive Plus.  They have an oily ingredient that helps address the problem arising from reduced secretions from the Meibomian glands, resulting in the tear film evaporating too quickly.  Please don't be put off by the mention of oil, they do blur vision a bit for a while after application but that clears & I find they provide good relief from the discomfort & control inflammation well - more than any others I've tried.    Whatever you use, they should be preservative-free for long term use.  Please feel free to PM me if you want any more info.

https://www.sjogrens.org/living-with-sjogrens/survival-tips

Wx

P.S. forgot to say I also use Blephagel morning & night to keep lids & lashes clean.
« Last Edit: October 13, 2022, 05:59:35 PM by Wrensong »
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Me

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Re: Sjogren's advice
« Reply #3 on: October 11, 2022, 11:29:02 AM »

Hyaluronic acid tablets are brilliant.  Had no idea it's possible to take it as a supplement but apparently it's even suggested for people who have had eye surgery.  I really notice when I run out.  Drops just stop working after a while and then start irritating my eyes, even the ones that are preservative free.
I have all the same symptoms as you as a symtpom of inflammatory arthritis, but thankfully not all the time, with the exception of the eye thing.
When things are really bad with dry mouth I use a combination of the pastilles available online that work really well.. Xylimelts and another one, I can't remember the name.
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Pippa52

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Re: Sjogren's advice
« Reply #4 on: October 13, 2022, 10:10:05 AM »

Thanks so much everyone for your kind and really helpful advice and links etc - I really appreciate it.  I have an appt at the hospital next week so hopefully they will do tests and find out whether I have it or not.  So helpful though to get your advice..thanks again so much  Bless you all xx
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