Dry eyes, Sjogren’s and Plaquenil.

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hipokrytus
New Member


Date Joined Jun 2016
Total Posts : 2
   Posted 6/16/2016 7:59 AM (GMT -6)   
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 don’t 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.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7472
   Posted 6/16/2016 9:25 AM (GMT -6)   
Many people take Plaquenil for many years without any ill effects. The eye issues they are careful to warn about are actually very rare, and are even reversible, so as long as you get the appropriate eye exam once a year the risk is very, very small. It is the appropriate first treatment for several auto-immune diseases such as Sjogren's. (Did the rheumy diagnose Sjogren's?)

Several Sjogren's members here have gotten the tear duct plugs, perhaps they will come along and comment - I personally have no experience with them. I will say that if you are also experiencing mouth issues plugs will do nothing for that, whereas the Plaquenil may help both issues.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

hipokrytus
New Member


Date Joined Jun 2016
Total Posts : 2
   Posted 6/17/2016 12:10 AM (GMT -6)   
Thanks for the response.
The thing is I have not been diagnosed with Sjogren's yet. As I understand taking Plaquenil and seeing if it helps are a part of diagnosis.

What makes me unwilling to take the risk, however small it may be, is that I only seem to have two symptoms of Sjogren's: dry eyes and Raynaud's phenomenon. I've never noticed any mouth dryness myself. Also, Raynaud's is something I've had for as long as I remember, while the dryness started around 3 years ago.

On the other hand, taking it for, I don't know, 2 months and seeing what it does to me may not be such a big deal.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7472
   Posted 6/17/2016 6:06 AM (GMT -6)   
Plaquenil is one of those meds that builds up in your system and doesn't reach it's full effectiveness for 2-3 months.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1877
   Posted 7/15/2016 6:33 AM (GMT -6)   
The eye side effects of Plaquenil are fairly rare. It does help you feel better and does not suppress your immune system as much as other meds for auto immune diseases. I've been on it for a few years now and so far so good. It helped other things for me such as my blood sugars and allergies.
Sjogrens syndrome 2/15 via lip biopsy:depression, fibromyalgia
colitis-resection 11/10, hashimoto's thyroiditis, morphea, GERD
Meds: plaquenil, synthroid, metformin, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, alpha lipoic acid.
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