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Sjogren's syndrome

Patient interviews

Bonnie B.

lupus, Sjogren’s Syndrome

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Interviews of patients with other diseases are also available.

I was diagnosed with Sjogrens at the time of inquiring with my doctor about MP. My eyes were red, my saliva was increasingly scanty such that I could only get ½ way through a serving of potato, my favorite food, if I was very lucky.

It must have been the latest of my 'auto-immune' diseases to kick in, as it began to clear up early. After a year on OLM 40mg six hourly, my eyes were no longer red.. I can now eat potato although I still need to take it slowly. - Sallie Q

see The eyes have it (Registration required)

Patient experiences and discussion from Study Site topic(s)

eC posted: Mon Mar 21st, 2011 to E-N's progress thread.

“I started to suffer from my eyelids sticking to my eyes in the night two years into the MP (I am now a few months into year 5). At first, it was just that and brought on by a sleep med in the same family as Valium, which I had to stop using after a couple of months because it became ineffective. I now find that any drug like Valium makes the situation worse. I also found that if I gently rubbed my eyelids (if I remembered to do that)before opening, then I would be fine (or relatively fine). I used coconut oil before bed when it was an every night problem and that took care of it.

Now, however, the coconut oil seems to aggravate. Also, now, I appear to be producing scratchy crystals under my eyelids at night and so gently rubbing my eyelids are a huge NO NO. Instead, I find that I have to use artificial tears (I use the kind that have individual portions b/c I find them easier to negotiate when I can't open my eyes to see) before opening my eyes. I just apply the artificial tears to the corner of my eyes and allow them to seep in. I don't have to do this every morning… sometimes just lying there and waiting will allow me to open my eyes. On some mornings, though, they are painfully stuck and not would do but use the artificial tears.”

A D replied Mar 23rd, 2011 “My eyes have been a problem for a long time. First I felt that I had fibers in my eyes and was constantly trying to find them but never could. For years I blamed it on my woolen blanket. But, then when the fibers started to turn into glasslike shards I realized it was part of my Lyme symptoms. For a while, before I was on the MP, I needed to use eye drops many times during the day…my eyes were severely dry and irritated, but always the worst in the am. My doctor didn't believe me when I told him I had glass-like shards…he thought I was joking. Crystals is a better word, but they feel like glass to me. My eyes are constantly changing as I proceed through the MP. I can go for long periods with no problems at all, and then, the grittiness and the stickiness return, usually accompanied by blurred vision and other herx symptoms.

The only thing that seems to help is the natural tears eye drops.

I put the sandlike grains that my skin used to exude and the crystals in my eyes into the same category. The sand has stopped…so I am hoping the gritty eyes will eventually as well.”

SQ posted: Tue May 3rd, 2011 05:56 “ for months and months maybe years before I started MP, I experienced gritty eyes. I always thought I had something in the eye as it would come and go, also I live in a windy dirty part of a big city. I had never heard of Sjogrens syndrome, and when I went to my MP doctor to complain of mental problems including memory loss and severe irritability (temper tantrum) my hubbie asked for a diagnosis and we were told Sjogrens ….it has been a real eye opener.”

eC posted “I've discovered that eating lettuce consistently makes the eyelid sticking to the eyeball problem much worse. I can have lettuce occasionally, just not consistently. Yet another thing to remove from my diet to keep my IP tolerable.”

TC Posted: Sat Sep 1st, 2012 04:16 “I found information that said many bacteria, microbes etc accumulate on the eyelashes. I think that is what our eyelashes are meant to do to protect our eyes and keep that stuff out of them.

When my eyes get itchy and watery, I gently scrub my eyelashes with a gentle soap and water 3-4 times a day or as often as needed. It works for me.”

SQ posted “Lee recommended washing eyelashes in baby shampoo I was about to go and look for “No More Tears”, the only name I knew of when I noticed my daughter had left 'Aveeno, Ultra calming Foaming Cleanser' next the basin” :-)

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home/diseases/sjogrens.txt · Last modified: 07.31.2018 by sallieq
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