Does plaquenil help dry eye?

[tearless2]

My rheumatologist thinks I probably have sero-negative sjogren's and I am debating going on plaquenil. I do not have any arthritis. He is leaving the decision up to me. Does anyone feel that plaquenil specifically helped their dry eye or is it mainly for arthritis symptoms? How do I know if I should go on it?

[y-gwair]

Hi. I have a similar condition, I ended up with a diagnosis of sicca syndrome/undifferentiated connective tissue disease, which I guess probably amounts to the same thing as sero-negative Sjogren's. I have been on plaquenil for about 18 months and whilst I did find it very helpful for alleviating oral dryness/burning and rheumatic aching/fatigue, but I really can't say I noticed any impact on my dry eyes. However, rather stupidly I came off it last summer for a couple of months (during really bad bout of swine flu), and virtually every symptom came back or worsened, including the dry eye problem (plus some new ones like skin photosensitivity).

Re. eyes, I don't think it will help aqueous deficient dry eye, there's little evidence from trials/research that it does and my eyes were still very dry after nearly a year of treatment. However, I think my current flare of eye problems is probably linked to my inflammatory skin problem; plaquenil may have taken the edge off the photosensitivity but hasn't helped stop the burning sensations in my eyes/skin so far. I'm now looking at topical anti-inflammatories such as ciclosporin drops (restasis) for the eye, and am going to ask about similar treatments for the skin when I see the dermatologist. Most people with Sjogren's taking plaquenil still end up having to resort to punctal plugs, drops and restasis to control their eye problems.

I will have to stay on plaquenil for the medium term at least, but that's for control of systemic symptoms of fatigue, aching, burning muscles, numb extremities etc. I don't think I would bother just for dry eye; the exception would be if your specialist thinks you have something like ocular lupus (which can mimic blepharitis symptoms) which plaquenil apparently can treat very successfully. I hope your rheumatologist mentioned the risk of retinal toxicity with this drug?

[PotatoCakes]

I saw a rheumatologist to get tested for Sjogren's (negative results) and she prescribed me Exovac on the off chance it might help my eyes (I have NO other Sjogren's symptoms or accompanying disorders). It's different than Plaquenil, of course, but when I spoke with my GP about it, he said that it wouldn't help because the tear glands are smaller / very different than salivary glands. I did try the Exovac but gave it up after 3 days -- the side effects (profuse sweating and salivating) were so miserable that I couldn't tolerate it.

I don't know what the side effects are of Plaquenil but if they aren't terrible, it wouldn't hurt to try it for a while and see if it does help. If it doesn't help, go off of it, although make sure you're on it long enough to really know if it would help (3 days isn't long enough). Here's a site with side effects / risks for your review: http://www.rxlist.com/plaquenil-drug.htm

[y-gwair]

The side effects of plaquenil can be significant, due to the risk of Retinal Toxicity; although this is mainly associated with long-term usage, signs of damage can very occasionally happen earlier on, so it's not a drug to take without good cause. The side effects are variable, it can cause a lot of digestive upset for many people, plus skin reactions, difficulty sleeping less commonly. You need to take it for a minimum of 6 weeks before it even starts to work, and up to 6 months to see it's full effect, which is quite a commitment if you are not sure that there will be any benefits.

Re. pilocarpine (similar drug to evoxac), there are studies that suggest it can improve tear quality and other signs of dry eye, even if it doesn't increase absolute volume of tears:

Oral pilocarpine for the treatment of ocular symptoms in patients with Sjögren’s syndrome

Pilocarpine tablets for the treatment of dry mouth and dry eye symptoms

Oral pilocarpine for the treatment of keratoconjunctivitis sicca with central corneal irregularity

It's probably worth trying pilocarpine before plaquenil. It works by stimulating the nerves that control exocrine gland secretions, unfortunately it not only stimulates eye/salivary glands, but many other glands including those that control perspiration and gastric secretions. Quartering the tablets helps reduce unwanted side effects. I know someone with Sicca syndrome (dry eye/mouth) who finds it helpful for eyes and mouth. It can take a few weeks to see the full effect.

[tearless2]

Thanks for all of the replies. I am definitely reading them with care. When I expressed interest in plaquenil and evoxac the rheumy recommended starting with plaquenil first to see if there were side effects and then evoxac. I would rather do it the other way around since dry eye is my main problem and there are less side effects with evoxac. What do you think?

[y-gwair]

I wouldn't try to start both together, as they both can have unpleasant gastric side effects. I found pilocarpine gave me a very bad stomach, worse than Plaquenil to be honest, plus acid reflux. I had to stop taking it because it gave me terrible burning mouth/swollen tongue. Most people don't have these side effects though, or find that they ease off after a while, maybe evoxac is different. If your rheumatologist genuinely feels that plaquenil will be helpful then I guess it's worth giving it a try. I had to have blood tests for liver/kidney function before starting, plus 'baseline' eye test to check for any existing retinal disease. I did lose some visual acuity after starting (lost ability to read bottom 2 lines on eye within 9 months of starting it, needed slightly stronger lens prescription) maybe that was just coincidence, I don't know.

Good luck, hope it works for you.

[Guest]

Just thought I'd chime in with my pilocarpine experience - the first time I went on it, I started with 5mg per day the first few days, then 5 mg twice per day for about a week, then 5mg 3 times daily for almost a week, then up to 5mg 4 times daily thereafter. After a couple of weeks on the 5mg 4 times daily dose, this dry cough I have was getting really bad, so I had to quit. Quitting took the cough almost totally away practically overnight, but this really bummed me out because it was very helpful for my eyes - no miracle cure, but definitely a noticeable increase in moisture starting about 1/2 an hour after I took it, and lasting about 2.5-3 hours.

A couple of months later or so, I tried the pilocarpine again. This time, I increased the dose much slower... started on 5mg once daily for 1 MONTH, then 5 mg twice daily for 1 MONTH, then 3 times daily for a month, then 4 times daily... I've been at 4 times daily for almost 3 months, and no issues. Not 100% sure if it's coincidence, or the slower taper that made a difference, but I'm sooo happy I'm tolerating it now, since it's very helpful to me.

[tearless2]

Thank you for the detailed response Saag. It's great that you took a chance and tried this med again with the tapering. I will definitely menton slow tapering up to my MD as I really want this to work. Is there a reason why you were on pilocarpine vs. evoxac? Are these the same meds but one is a generic?

[Guest]

We don't have Evoxac here in Canada yet, that's why I tried pilocarpine.

[y-gwair]

That's really interesting SAAG, thanks for sharing. I just wish I could tolerate it. I guess the manufacturers of Evoxac market it more aggressively, I think they are pretty similar drugs to be honest (generic pilcarpine is a lot cheaper).

[Guest]

Oooo... can't wait until the pilocarpine goes generic here too - would be nice to have it available for less money!

[MaryVa61]

I have many Sjogren's symptoms but am also seronegative. Plaquenil seems to have helped my pain problems quite a bit, but didn't help my eye problems at all. I haven't had any side effects from the Plaquenil. It did take months to feel the full effect of the drug. I have a script for Pilocarpine but I'm a little reluctant to try it because I'm so prone to side effect problems with drugs so want to exhaust non-medication methods first. Right now I seem to be having some positive response to fish oil and flax oil so I want to give that more time first.

Hope things get better for you!