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Margaret

Medication for Sjogren's

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Hi Everyone,

 

Does anyone take a pill for their Sjogrens' dry eyes and mouth?

 

Gareth won't allow me to use drops in his eyes :glare: and the rheumatologist recommended Salagen (pilocarpine) tablets twice a day. I'm skeptical about adding another pill to his daily number - he's up to 6 now, plus a multivitamin, flaxseed, and acidophillus. Do dry eyes hurt? :emoticon-dont-know: He's always twitching/blinking, but he has Tourette type tics, too. Would it help to give it to him at night...do dry eyes bother you when sleeping? She said it would make him drool.....not something he'd be bothered by but others would!!! (Emoticon for Gross!!!)

 

Thanks for all your help. :thank-you:

Take care, Everyone.

Margaret

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Hi Margaret,

 

I have Sjogrens like many of us do and I would have to say that dry eyes are bothersome. They don't really hurt as such but the sandy, gritty feeling is not nice. As well, the Opthalmologist gets upset about the damage too little lubrication can do.

 

Gareth is still young and probably won't have got to the stage where age is affecting his vision , so nobody else has started on at you about the dryness I guess. I personally found that the eye drops didn't really help much and I preferred to manage without them. I haven't had my eyes re-tested for a while either so I haven't had 'the lecture' lately :rolleyes: .

 

Just thinking about the whole issue I am wondering if there might be a 'gel' that Gareth could put in himself. Ah well! dream on - it is all very well to think up these good ideas isn't it.

 

 

Warm hugs and best wishes

JudyT

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Hi Margaret,

 

Thankfully I don't suffer with Sjogren's and I'm very sorry to hear that Gareth has these unpleasant symptoms to deal with.

 

Pilocarpine seems to be the drug of choice for Sjogren's as your rheumatologist has suggested and I've also found an article here on treatment of sicca symptoms with hydroxychloroquine in patients with Sjögren's syndrome which I thought might be interesting to you as I know you've said that Gareth takes Plaquenil. We also have a medical page on treatments for Sjogren's and as Judy has suggested there are details of a gel available which might help him if he doesn't mind you using that.

 

I'm sure some of our other members will be along to give you some first hand advice. :)

 

Best wishes,


Jo Frowde

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I'm taking salagen. Technically I'm not taking much - I'm supposed to take one pill three times a day, but I always forget the second one. I find it doesn't always work, but I could always get the dosage increased to two pills three times a day (or I could try harder at remembering the middle one!).

 

On the double dose, which I've done in the past, I found it made me feel kind of like I had morning sickness afterwards, which I didn't like too much, but the single dose doesn't do that for me.

 

But, yes, I do get a nice drool going on sometimes :blush: , as well as getting really sweaty at night sometimes.

 

My dry eyes can bug me from time to time; mine don't really hurt so much, but I don't think they're as dry as some people get. I'm on a Sjogren's forum and a lot of people there complain about their eyelids sticking shut in the mornings, they're so dry. A lot of them use the gel through the night, and actually tape their eyelids shut to stop anything from leaking out.

 

I don't think the salagen helps the dry eyes as much as the mouth, though. I seem to still need the eye drops.

 

Actually, you could try a Sjogren's forum. I don't think I'm allowed to put actual forum names on here, but if you google about it, you could find somewhere where you could ask people with severe dry eyes about their experiences.

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Hi Jo ,

 

When the eye doctor did the Schirmer's test last year, and Gareth did so poorly (I think he had a 2 and 3 out of 6)he said the treatment was Plaquenil. I told him Gareth had been on it for almost 5 years.....so why the SS now? He didn't know. The Rheumatologist says the same....not sure why the SS symptoms are progressing. He goes in for his yearly exam with the eye doctor (because he's on Plaquenil), at the end of this month.

 

Thanks for all the help!

Take care, Everyone.

Margaret

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I've has Sjogrens's for about 12 years. It effects my mouth worse than eyes. At night, I frequently wake up with a mouth so dry that it has become painful. Biotene mouthwash seems to help with this pain/inflammation. Eyes are usually only effected when stressed, such as driving long distances. Sort of odd, since the Schirmer test gave me a 1 (or slightly less!).

 

Oral hygiene is very important, since the flow of saliva has a cleaning/disinfecting effect on the mouth. I like to always keep a glass of water available to sip from time to time.

 

I take Evoxac at night, which (I'm told is supposed to be more effective than Salagen [but since it doesn't help much, I have my doubts]).. I believe it is classified as a "cholinergic agonist". No side effects. Among several other drugs, I take Plaquenil, which doesn't seem to effect the Sjogren's. Many drugs and supplements make dyness worse, so it is good to review any of these with your doctor so as to avoid taking anything with a "cholinergic antigonist" effect. Definitely never drooled (though that would probably mean it's working!)

 

As for not taking eye drops. I presume it is ihe eye pain I experience is tthe same as dry, painful eyes that anyone would get. I haven't had it to the point of grittiness.

 

If he chooses not to take drops, then so be it. They are a great relief to dry eyes (even for those without Sjogren's!). There are many good product available. A doctor might recommend something best. I prefer one of the high quality thicker solutions especially for dry eye. If you haven't already, you might acquire some so it is available should be he change his mind.

 

Good luck

 

Craig

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Hello Margaret

 

Sorry to come in so late but I would have thought that dry eyes could and would be painful. I know my sister had a bout of dry eye about 10 years ago and she said it was awful. You can get a gel for dry eyes, I tried it but you loose clear vision for about 2 minutes because being a gel it's greasy and causes your vision to blur. Maybe Gareth could put it in himself?

 

I get bouts of dry eyes and mouth but weirdly it's only when I lie down? How does that work?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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Hi,

I'll put in my 2 cents. My dry eyes are painful. It is uncomfortable and with my sicca symptoms, I think my eyes are more bothered than my mouth. I use Restasis (cyclosporine) drops and that helps me a ton. I also have tear duct plugs in the lower tear ducts. That helped a great deal especially at first. The Salagen made my heart burn so bad I couldn't take it. The pills were getting stuck part way down. Since Gareth has swallowing issues, it might not be the best thing. I use a lubricant eye drops which are my preferred, you should try a variety... everyone is different. I tried the gel. It didn't seem to help all that much for the inconvenience of not seeing for a while since it makes your vision blurry for a short time. I know someone with dry eyes as the result of laser eye surgery, and she says her eyes are extremely painful. Salagen helped with my mouth but not so much my eyes.

 

I do a lot of squeezing my eyes shut to get some moisture to distribute in the eye. If he is doing that you might want to try some drops.

 

Mando.

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I was taking Evoxac. I wasn't sure that it ever helped with my dry eyes or mouth (It's a pill) but my back would sweat like it was raining and I hated it. It also gave me chest pain, so I stopped taking it. I use drops all day long and drink all day long. Biotene products of course help some.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Everyone,

 

Thanks for all the responses and feedback. I did try the Salagen for about 2 weeks and noticed a definite change in behavior.....very reclusive/shut down/in bed a lot. :sick2: I was giving him one pill a day, 5 mg, in the morning, figuring it would help his eyes during the day. Unfortunately, he would never tell me what was *wrong* but he was spending too much time in bed and that was the only new medication. He sees the eye doctor next month and I will ask about other options. It may have to be that they get so irritable that he will want the eye drops. That is the one *quirk* of autism that really bothers me.....the inability to relate pain and discomfort. :angry:

 

Take care, Everyone, and once again, a BIG :thank-you-2: for all of your help and insight.

 

Margaret

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The Salagen can make you very sleepy that might be what he was experiencing. I use Restasis and Systane drops. I also use a humidifier 24/7. A humidifier helps somewhat and is better than nothing. I have heard the tear duct plugs work okay. I would keep trying with the eye drops as that is the best protection. If his eyes get really dry and he rubs them it can cause a corneal tear which if it keeps happening can affect his vision. See if he will put the drops in the lower lid. Have him look in the mirror and pull down the lower lid instead of laying down with the drop coming straight at the middle of the eye this is usually easier for people to do. Hope this helps.

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My Cornea doctor has me on a whole dry eye regime as my corneas are starting to break down. The regime includes

FML (fluorometholone suspension) drops twice a day

Restasis drops twice a day

Fish oil 1-3,000 mg a day (the oil gets excreted by the glands above the eye and gives a nice film over the eye)

Punctal Plugs which were surgically implanted - the ones that sit on top of the eye lid did not work for me

Warm compress on the eyes for 10 min twice a day

Humidifier

Preservative free eye drops every hour

Presernative free salve at night

 

This routine has reduced the episodes of waking in the middle of the night with my eyes aching and the Cornea doctor says the damage to my cornea has stabilized. Dry eyes are evidently a very serious issue that can lead to loss of vision and significant eye pain. The routine is cumbersome, but better than the alternative of vision loss.

 

Good luck.

Jill

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