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Biomarker for Diffuse Scleroderma skin has been discovered!


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Relief From Gritty Eyes.


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#1 kiwimum03

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Posted 05 November 2006 - 09:16 PM

Hi everyone,

when I saw my new rheumatologist he said I had symptoms of sicca syndrome as my eyes get quite gritty at night.

Since I saw him I saw him 2 weeks ago the grittyness has started to get worse and am now getting earlier in the afternoon and it is starting to really bother me.
I am unsure how to aleviate it as the rheumatologist didn't discuss it with me as it didn't bother me too much 2 weeks ago.

I don't see him again until the end of the month, so I was wondering if my family doctor would recommend something or can I just get something from the pharmacy to help?
Does anything help or should I just leave it until I see him?

Also the skin around my eyes feels very dry this last 2 weeks too and I am putting on more moisturiser on it 3 times a day, is this from the sicca syndrome?

Thanks for reading this far. I am having trouble with my carpal tunnel too, but will leave that for another post....

Hugs,
Irene

#2 janey

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Posted 06 November 2006 - 03:55 AM

Irene,
My eye doctor recommended an OTC lubricant eye drop that works pretty good for me. I'll send you a private message with the brand name. You might want to make an appointment with your eye doctor. They're probably more qualify to help you out with the eye problem.
I hope you find a solution. I know how uncomfortable that is.
Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 kiwimum03

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Posted 06 November 2006 - 09:26 AM

Thanks Janey that would be great! Should I be seeing an Opthamologist? Is that the right person?
So do you think having dry, uncomfortable skin around they eye is also from sicca syndrome, or is that part of Scleroderma?

Thank for your reply,

Irene

#4 Guest_Sherrill_*

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Posted 06 November 2006 - 09:49 AM

Hi Irene,

I have/had similar eye problems, and although I consult a very good ophthalmologist, I did a lot of research into the best thing for them. My ophthalmologist is excellent, but wanted to seal my tear drainage ducts closed so the tears would stay in my eyes.

I wasn't too keen on this and found an excellent lubricant eye drop which at the time was only available overseas and not in NZ. I imported it from a website which sold it, and it made my eyes improve so much that even the ophthalmologist was impressed. I also showed it to the rheumatologist we both go to now, and he was interested and made a note of the name. These are now available in NZ, though I have to buy them through my optometrist, as I haven't found pharmacies stock them.

One thing you have to be careful of is to find a lubricant eyedrop which does not contain any preservative, as this builds up in your eyes and makes them hurt even more! I use them about 4-5 times a day. I also use, on the ophtalmologist's advice, an OTC eye ointment in my eyes at night to stop my eyes drying out when I'm asleep, as that is very uncomfortable, and can make your eyelids stick to your eyes!

Yes, sicca syndrome, and Sjogren's Syndrome are common in conjunction with scleroderma, but you can also get it on its own too.

I had and am having a number of other problems with my eyes, and regularly consult an ophthalmologist. If you would like his name I can give it to you, and would recommend him. I saw one before this one, and I am sure he actually caused damage to my eyes because he just couldn't be bothered, and didn't understand scleroderma!

Like Janey, I will send you a personal message with the brand name of the eye drops I use, and just in case the sort she uses are not available here in NZ. You may have a slight hunt for them if you want them, as I said that my optometrist stocks them, though I don't know if they all do. I'll also include the name of the eye ointment if you want to try it.

#5 janey

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Posted 06 November 2006 - 10:21 AM

Irene,
Sherrill provided some great information and since she has the same problems as you, what a great source!

Yes, as she says, you should be seeing an ophthalmologist. Just one more member of your health team.

The dryness around your eyes may be due to the scleroderma as well as the SS. Here's a link to Sjogren's Syndrome: Dry Eyes. You might find some useful information here as well.

Let us know if you find something that works for you. Also, please let me know if you did not receive my private message.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 kiwimum03

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Posted 06 November 2006 - 07:31 PM

Thanks again Janey and Sherrill,

I got your PM's and they were both VERY helpful.
I wasn't sure before if I should try a lubricant, as I kind of thought the grittyness would go away, but no........its gotten worse, much to my annoyance.

Thanks again for your quick replies and advice as I was feeling a bit lost with all this.

Big hugs,

Irene

#7 Guest_Sherrill_*

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Posted 06 November 2006 - 07:56 PM

Hi Irene,

I'm glad we could help! I have sent you another PM with more info, including the name of my ophthalmologist.

I do understand that lost feeling too! At first it just seems like one thing after another, but eventually you almost become used to it, and it becomes easier to sort things out as they happen.

One thing which my ophthalmologist picked up on straight away was that I was using a makeup, particularly under my eyes for dark circles, which was flaking off in very tiny flakes, into my eyes and making the irritation worse! He told me what sort NOT to use, and recommended one which is expensive, but doesn't flake. I use that sort now for the dark circles, and soon after I started on it he remarked how much better my eyes were, and that he couldn't see any makeup flakes in them any more!

I wish you luck with your eyes, as I know how annoying they can feel!

#8 Sweet

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Posted 07 November 2006 - 11:56 AM

Have any of you used Restasis? If so did it help? Any side effects?

Thanks, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Heidi

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Posted 07 November 2006 - 11:58 AM

Hi Sweet,

I tried Restasis (I used it for about 6 months). I didn't have any side effects but it didn't make any difference in the dryness of my eyes at the time. I found I was still using the same amount of eye drops as before (using them 3-5 times a day) I started the Restasis and I remember it being very expensive (even with insurance).

Warm wishes,
Heidi

#10 Sweet

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Posted 07 November 2006 - 11:59 AM

Thanks Heidi for the info. I wonder if you can use it if you wear contacts??

Thanks, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)