Plaquenil and it's affect on my dry sjogren's eyes..update

[jenny2008]

i had posted on here before that i was trying plaquenil to help with my dry eyes and mouth from sjogrens (i don't seem to have the RA problems associated with it just ext dry eyes and mouth)

anyway, i have been on 400mg for almost 5 months now (it actually took me about 1 month to get up to 400mg )... Here is my update... It hasn't seemed to help my mouth at all but thankfully Evoxac helps me with that except at night and when I wake up--ughh so dry...

As far as my eyes I am very surprised that it seems to be helping.. the past 2 months i have been making more tears of my own and my eye drop usage has cut down considerably. Also, for those of you with sjogrens you know all about the nasty 'flares' we get--well I do still get them but now it seems I will flare for a day or 2 at most and the rest of the week i feel pretty decent and I am not having flares every week. Before plaquenil I could go into a flare up and my eyes would be so awful for about a week or so. So, i am keeping my fingers crossed...

It isn't a 'cure'.. but it seems to be helping my eyes and instead of carrying tons of drops with me i have mostly been caring small packets of tissues as i have to blot my eyes a lot--(no complaint tho) i rather do that then be so unbearably dry..

I also have MGD and it doesnt seem to have any affect on that whatsoever..

[bp77]

i had posted on here before that i was trying plaquenil to help with my dry eyes and mouth from sjogrens (i don't seem to have the RA problems associated with it just ext dry eyes and mouth)

anyway, i have been on 400mg for almost 5 months now (it actually took me about 1 month to get up to 400mg )... Here is my update... It hasn't seemed to help my mouth at all but thankfully Evoxac helps me with that except at night and when I wake up--ughh so dry...

As far as my eyes I am very surprised that it seems to be helping.. the past 2 months i have been making more tears of my own and my eye drop usage has cut down considerably. Also, for those of you with sjogrens you know all about the nasty 'flares' we get--well I do still get them but now it seems I will flare for a day or 2 at most and the rest of the week i feel pretty decent and I am not having flares every week. Before plaquenil I could go into a flare up and my eyes would be so awful for about a week or so. So, i am keeping my fingers crossed...

It isn't a 'cure'.. but it seems to be helping my eyes and instead of carrying tons of drops with me i have mostly been caring small packets of tissues as i have to blot my eyes a lot--(no complaint tho) i rather do that then be so unbearably dry..

I also have MGD and it doesnt seem to have any affect on that whatsoever..

hi, do u know the side effect of Evoxac? does it have any effect on the vision? like double or blurry vision? thanks.

[jenny2008]

Evoxac doesn't affect my vision at all and i dont recall that ever being a side effect. When I first started taking it it made my body perspire a little in the first hour but then that would subside.. Also , I used to get a little dizzy from it but again that would go away within the hour. Now that I have been taking it for about 3 years I don't get any of those side effects.. If you have dry mouth I would suggest trying it..

[bp77]

Evoxac doesn't affect my vision at all and i dont recall that ever being a side effect. When I first started taking it it made my body perspire a little in the first hour but then that would subside.. Also , I used to get a little dizzy from it but again that would go away within the hour. Now that I have been taking it for about 3 years I don't get any of those side effects.. If you have dry mouth I would suggest trying it..

thanks for replying. what is plaqenil? is it the same as Evoxac? I have sever ded and mgd, I want to try what u did. I am so desperet... thanks.

[Guest]

Great news that the Plaquenil is helping you! Fantastic!

[jenny2008]

Thanks SAAG!!! I appreciate that!

Bp77--Plaquenil is for people with autoimmune disorders-i have sjogrens.. If you have MGD i doubt it would help you and I doubt a doctor would prescribe it since you don't have the auto immune ( be glad!) ..

Uhm. Evoxac is used for dry mouth but i have talked with some people who said it helped with their dry eyes--some opthamologists will prescribe it in the hopes of it helping dry eyes but some won't as there are not a lot of studies that it helps with the eyes.. it mainly helps with the mouth--if you mouth isnt dry again, i am not sure if you would want to try it because you will make a lot of saliva..

I have also been taking about 3600mg of Nordic Naturals omega 3 liquid fish oil-I get it at GNC and it has a pretty high ratio of DHA and EPA.. I also do a daily warm compress and have also begun an anti-inflammatory diet in late December.. My glands have looked good the past few appointments as far as posterior blepharitis--but my anterior blepharitis has been kicking me in the but with a few flare ups... I hear that specialized diets can take up to 6 months to work if they are going to help..

If i come across anything else that helps with MGD i will be sure to post.. Good luck to you

[bp77]

Thanks SAAG!!! I appreciate that!

Bp77--Plaquenil is for people with autoimmune disorders-i have sjogrens.. If you have MGD i doubt it would help you and I doubt a doctor would prescribe it since you don't have the auto immune ( be glad!) ..

Uhm. Evoxac is used for dry mouth but i have talked with some people who said it helped with their dry eyes--some opthamologists will prescribe it in the hopes of it helping dry eyes but some won't as there are not a lot of studies that it helps with the eyes.. it mainly helps with the mouth--if you mouth isnt dry again, i am not sure if you would want to try it because you will make a lot of saliva..

I have also been taking about 3600mg of Nordic Naturals omega 3 liquid fish oil-I get it at GNC and it has a pretty high ratio of DHA and EPA.. I also do a daily warm compress and have also begun an anti-inflammatory diet in late December.. My glands have looked good the past few appointments as far as posterior blepharitis--but my anterior blepharitis has been kicking me in the but with a few flare ups... I hear that specialized diets can take up to 6 months to work if they are going to help..

If i come across anything else that helps with MGD i will be sure to post.. Good luck to you

hey jenny, thank u so much for answering my questines. u r so nice. I also take 4 loveza fish oil. Is it the same strength as the GNC fish oil? I also recently went up on the doxy to 200 mg. still very dry and my gland are clogged. I also use azsite to on the lids. do u have swllen lids? do u think that this diet helps with the swelling of my lids? I think we are the same age and almost the same problem, i hope they find the cure fast before we get old. for me it is so hard to live this life. thanks...

[jenny2008]

No prob... Yes i think the doxy def helps keep the inflammation down-although i do get flare ups with the glands still.. however, when i wasn't on doxy my eyes were always inflamed and my eyelids always really thick and swollen.. Give the doxy several months to kick in ... also I do the daily warm compress in the am and massage the lids.. i also use ocusoft lid scrubs am and pm...
the fish oil you take is probably just as strong if not stronger than what i am on as yours' is a rx... i would stick with it...

i know my eyes got terribly bad around xmas time and i had been eating whatever i wanted since right before halloween--i do think that made my eyes flare up and clog up-i was eating really bad foods-lots of sugar, fast foods.. etc...

now that i am heating healthy and trying to limit my sweets to once a week and no high omega 6 foods i am finding my eyes seem to be doing way better...

i hope you get to feeling better.. and yes with all the people who have MGD you would think eventually they will come up with better meds to help us!!

[bp77]

No prob... Yes i think the doxy def helps keep the inflammation down-although i do get flare ups with the glands still.. however, when i wasn't on doxy my eyes were always inflamed and my eyelids always really thick and swollen.. Give the doxy several months to kick in ... also I do the daily warm compress in the am and massage the lids.. i also use ocusoft lid scrubs am and pm...
the fish oil you take is probably just as strong if not stronger than what i am on as yours' is a rx... i would stick with it...

i know my eyes got terribly bad around xmas time and i had been eating whatever i wanted since right before halloween--i do think that made my eyes flare up and clog up-i was eating really bad foods-lots of sugar, fast foods.. etc...

now that i am heating healthy and trying to limit my sweets to once a week and no high omega 6 foods i am finding my eyes seem to be doing way better...

i hope you get to feeling better.. and yes with all the people who have MGD you would think eventually they will come up with better meds to help us!!

thank u so much for all the advise. I have been on doxy 100 mg for 7 monthes and 10 days ago i went up to 200. I hope that reduces my swelling. thanks.