Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hello,
I have a few questions that I'm asking at the end of my post.
I'm a 30-year old male with these symptoms:
1. Dry eyes started in the autumn of 2013 burning of the eyes in various degrees, confirmed by ophthalmologists. There is some discomfort when reading and significant discomfort when looking at TV or computer screens (in the last case no amount, frequency or type of eye drops seemed to ever help, perhaps wearing shades helps a bit). When I dont perform any of these activities, the discomfort is quite bearable except late in the night. The problem seems to have progressed since 2013. I admit I ignored the problem for the first 6 months (didn't take any drops) which may have led to the problem number 3. The 7 eye doctors I've seen just kept prescribing some drops, none of which made a significant difference. None of the doctors seemed very inquisitive regarding the cause of the dryness.
2. Raynaud's phenomenon what I want to stress here is that I have this for as long as I can remember maybe even 15 years which makes me wonder if it can be connected, not having started at around the same time as my dry eyes.
3. The left eye pain started in the spring of 2014, quite sharp and hard to describe. It's probably connected with my dry eyes. There are periods, however, when it leaves me at peace. In the beginning, it was instantly triggered by looking at TV or computer screens. Now I don't really know.
4. Dry mouth ?? my dentist told me I seemed to have saliva production deficiency, but I have not noticed any discomfort in this respect.
5. Light sensitivity (eyes).
Things I have tried to alleviate the dryness:
- drinking a lot of liquids,
- changing diet to a more eye-friendly one,
- making sure the humidity level, where I spend most time is normal (it is, - also no air-conditioning),
- having new glasses prescribed and bought,
- using supplements for eye health,
- making warm compresses and taking care of eye-lid hygiene,
- using different kinds of artificial tears.
I don't believe any them have brought any noticeable relief. Of course not using a computer, not watching TV, and not reading.... do help.
I read on Wikipedia about the Sjogren's syndrome and I connected the eye dryness with Raynaud's phenomenon. I went to a rheumatologist. I was told to do the anti-nuclear antibodies test, which was negative. Then I was to do some blood-work and check with an eye doctor, regarding the permission to use a drug called Plaquenil. He said it was ok to take it.
But then I started reading about the ill effects that Plaquenil may have, and I even started hoping the drug won't help so I will avoid long-term use. I decided to postpone taking it.
Do you think the Raynaud's phenomenon is related to my dry eyes?
I ask this because so far these seem to be the only two confirmed issues that point to Sjogren's and the former started occurring many, many years ago, while the dry eyes about three years ago.
Do you think it is the right stage of diagnosis of Sjogren's to take Plaquenil?
Even if I do have Sjogren's, I hear I won't be able to cure the cause of dry eyes, but only alleviating the symptoms will be possible so....
should I not go for temporary tear duct plugs or something, instead of risking suffering some ill effects of Plaquenil?
If you have any suggestions to any of my issues, I would be grateful.
I have a few questions that I'm asking at the end of my post.
I'm a 30-year old male with these symptoms:
1. Dry eyes started in the autumn of 2013 burning of the eyes in various degrees, confirmed by ophthalmologists. There is some discomfort when reading and significant discomfort when looking at TV or computer screens (in the last case no amount, frequency or type of eye drops seemed to ever help, perhaps wearing shades helps a bit). When I dont perform any of these activities, the discomfort is quite bearable except late in the night. The problem seems to have progressed since 2013. I admit I ignored the problem for the first 6 months (didn't take any drops) which may have led to the problem number 3. The 7 eye doctors I've seen just kept prescribing some drops, none of which made a significant difference. None of the doctors seemed very inquisitive regarding the cause of the dryness.
2. Raynaud's phenomenon what I want to stress here is that I have this for as long as I can remember maybe even 15 years which makes me wonder if it can be connected, not having started at around the same time as my dry eyes.
3. The left eye pain started in the spring of 2014, quite sharp and hard to describe. It's probably connected with my dry eyes. There are periods, however, when it leaves me at peace. In the beginning, it was instantly triggered by looking at TV or computer screens. Now I don't really know.
4. Dry mouth ?? my dentist told me I seemed to have saliva production deficiency, but I have not noticed any discomfort in this respect.
5. Light sensitivity (eyes).
Things I have tried to alleviate the dryness:
- drinking a lot of liquids,
- changing diet to a more eye-friendly one,
- making sure the humidity level, where I spend most time is normal (it is, - also no air-conditioning),
- having new glasses prescribed and bought,
- using supplements for eye health,
- making warm compresses and taking care of eye-lid hygiene,
- using different kinds of artificial tears.
I don't believe any them have brought any noticeable relief. Of course not using a computer, not watching TV, and not reading.... do help.
I read on Wikipedia about the Sjogren's syndrome and I connected the eye dryness with Raynaud's phenomenon. I went to a rheumatologist. I was told to do the anti-nuclear antibodies test, which was negative. Then I was to do some blood-work and check with an eye doctor, regarding the permission to use a drug called Plaquenil. He said it was ok to take it.
But then I started reading about the ill effects that Plaquenil may have, and I even started hoping the drug won't help so I will avoid long-term use. I decided to postpone taking it.
Do you think the Raynaud's phenomenon is related to my dry eyes?
I ask this because so far these seem to be the only two confirmed issues that point to Sjogren's and the former started occurring many, many years ago, while the dry eyes about three years ago.
Do you think it is the right stage of diagnosis of Sjogren's to take Plaquenil?
Even if I do have Sjogren's, I hear I won't be able to cure the cause of dry eyes, but only alleviating the symptoms will be possible so....
should I not go for temporary tear duct plugs or something, instead of risking suffering some ill effects of Plaquenil?
If you have any suggestions to any of my issues, I would be grateful.
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Also, as a precaution, get your thyroid tested. Autoimmune diseases tend to come in packs (sorry), and some of what you're saying falls into hypothyroidism as well. I have FIVE A/I diseases, and keeping all of them in check is quite challenging.
I have not been diagnosed with Sjogren's (yet), and the symptoms I have seem not many and disconnected in time. Plus, I hear Plaquenil may take months to take effect. Still, I guess I don't risk much by taking it for that long.
Sjogrens can have a false positive blood test result. The only certain diagnostic tool for Sjogrens is a lip biopsy. I myself have SS secondary to RA so was not given a biopsy but did have a Salivary gland scan that showed my salivary gland is practically non existent - or at least non-fiuntioning.
But truth is most symptoms ARE only treated - currently - symptomatically, though biologics like Orenica and Humira are on they rway to being approved for Sjogrens. As for Plaquenel - you'll have to weight the pros and cons, as with ANY medication, even aspirin or Tylenol. They ALL have side effects. It's a question of which would you rather, taking quality of life into effect.
Are you using eye drops ta all??? I am surprised your eye doctor didn't suggest RX restates. Ask about it. Also, if it is severe sometimes tear duct plugs help.
Often one symptom is more prominent than another, For me dry mouth was AWFUL - it affected taste, I could barely talk or eat anything prior to being diagnosed an lost 15 pounds as result of living on a liquid diet. My dry eye was barely noticeable to me though I have it and am now on restates and have had tear plugs put in!
It's a tricky disease and hard to diagnose. I happen to be fortunate enough to live near a Sjogrens center in Philla. There's another in CA and those are the only ones I know of.
Good luck!
I have tried many moisturising eye drops, but none of them has been any good.
And it doesn't really make a difference whether I take them every 10 minutes or every 2 hours, they just don't work or work poorly.
The only thing that helped me as far as using the computer goes was making white backgrounds go black and making text white (in the web browser, in test editors).
Anyway, thanks for your time and suggestions.