Re: Quinine, dry eyes

[Guest guest]

Rose,

Muscle spasms and quinine: Can you take Plaquenil-- it is hydroxychloroquinine and works well for not only the spasms, but some of the rigidity also.

On the dry eyes: once your life settles down and there is less drama (trauma) going on- and the tears aren't a huge part of most days-- you'll find that the dry eyes settle down also. This was a hard one for me to get-- but our "normal tears" from the moments of crying, actually dry the eyes out. The more your eyes "water" the drier they are. Add the sarc inflammation to the lacrimal glands under both top and bottom eyelids, and man do our eyes get dry! You're doing all the right stuff-- but if you are so photosensitive on top of the dry eyes, your MD Ophthalmologist needs to make sure you don't have iritis or uveitis also. This is the pumping station for intra-ocular pressure control, and the photosensitivity is generally a sign that you have active iritis-- and it can easily go to an acute glaucoma. You know the lecture girlfriend, so even though you are busy--as in bzzzzeeee, make sure you don't blow this

off.

Trust my friend, and all will get done and you'll be in your new house when you get back from the graduation.

Celebrate, celebrate, dance to music and celebrate!!!

Love ya,

Tracie

NS Co-owner/moderator

this & that

Thanks to all for the good thoughts. Naa Koshie, it's actually clouds I've always wanted in my bedroom! The tricky part is that I will be gone from 6/2-6/6, which is when I will need to be finishing up the move & cleaning this house. I'm going to San for my granddaughter 's h.s. graduation. I'm so excited for that, but a little worried about getting everything done here. Some of my church family are going to help with packing & cleaning & my kids and niece will do most of the rest. Re: muscle spasms. Marla, that is why I started taking quinine several years ago & it worked great. Now that quinine is off the market, I just have to put up with these weird cramps. They come in my elbows, the outside of my ankles, my side when I reach behind me, places that I never used to get cramps. It started after the fatigue & other systemic

symptoms began, so I assume it's sarc-related. Neuropathic pain: the best relief I had came from Lyrica & Cymbalta combined, for 2 years. Then last year I slid into a severe depression & my doctor felt I needed a stronger antidepressant than Cymbalta, so I changed to Lexapro. Well, the depression got better, but the neuropathic pain has just been much worse. So a couple of months ago I switched back to Cymbalta. Within a few days I could tell a difference in my feet; unfortunately, my dry eyes got much worse. I was already on Restasis drops, OTC artificial tears, ointment at night & had gotten my tear ducts plugged last fall. Now, in spite of all that, I was having painful gritty sensations, blinking almost constantly & wearing sunglasses indoors. My opthamalogist discussed Lacriserts, which are little capsules that you poke into the lower lid every day. They

gradually dissolve, releasing fake lubricant into the eye. I already poke myself in the eye all the time just putting in eye drops, even when I use the mirror, so I wasn't too keen on that. I decided to stop the Cymbalta first, after talking it over with my shrink. That seems to have helped, & I'm back on Lexapro. My feet are complaining bitterly, but I can stand that better than the eye pain. I didn't have that much trouble with my eyes when I took Cymbalta before, but my eyes have gotten drier in the last year anyway, so I guess restarting the Cymbalta just was the last straw. Unless you have very dry eyes, the Lyrica & Cymbalta is a good combination for neuropathic pain. Well, it's late. Hope all you Mothers & mothering women out there have a lovely Mom's Day!

Ramblin' Rose

A merry heart is good medicine. Proverbs 17:22

Get Free (PRODUCT) RED™ Emoticons, Winks and Display Pics. Check it out!

[Guest guest]

I just had an "ahh haa" moment reading your email. My eyes have been actually getting so dry, that my optometrist won't let me wear contacts anymore. (that and the "incomplete closure" from the facial palsy). He did a test on my eyes to see how dry they really were, the test where the numb the eye and then slip little pieces of what looks like paper behind the eye itself, and you keep it in there for 5 minutes and then they see how much tear production you have. Mine was just about nil. I didn't realize it was from the sarc. He thought it was from my hormones being off from the menopause. And, I was just prescribed Quinine for my leg cramps by my Rheumatologist last month, and boy that medicine really did not agree with me. It was almost as if I was blacking out. I don't remember parts of the days that I was on it. Just thought I would respond since your info really helped me out. Thank you, Christytracie feldhaus wrote: Rose, Muscle spasms and quinine: Can you take Plaquenil-- it is hydroxychloroquinine and works well for not only the spasms, but some of the rigidity also. On the dry eyes: once your life settles down and there is less drama (trauma) going on- and the tears aren't a huge part of most days-- you'll find that the dry eyes settle down also. This was a hard one for me to get-- but our "normal tears" from the moments of crying,

actually dry the eyes out. The more your eyes "water" the drier they are. Add the sarc inflammation to the lacrimal glands under both top and bottom eyelids, and man do our eyes get dry! You're doing all the right stuff-- but if you are so photosensitive on top of the dry eyes, your MD Ophthalmologist needs to make sure you don't have iritis or uveitis also. This is the pumping station for intra-ocular pressure control, and the photosensitivity is generally a sign that you have active iritis-- and it can easily go to an acute glaucoma. You know the lecture girlfriend, so even though you are busy--as in bzzzzeeee, make sure you don't blow this off. Trust my friend, and all will get done and you'll be in your new house when you get back from the graduation. Celebrate, celebrate, dance to music and celebrate!!! Love ya, Tracie NS Co-owner/moderator this & thatThanks to all for the good thoughts. Naa Koshie, it's actually clouds I've always wanted in my bedroom! The tricky part is that I will be gone from 6/2-6/6, which is when I will need to be finishing up the move & cleaning this house. I'm going to San for my granddaughter 's h.s. graduation. I'm so excited for that, but a little worried about getting everything done here. Some of my church family are going to help with packing & cleaning

& my kids and niece will do most of the rest. Re: muscle spasms. Marla, that is why I started taking quinine several years ago & it worked great. Now that quinine is off the market, I just have to put up with these weird cramps. They come in my elbows, the outside of my ankles, my side when I reach behind me, places that I never used to get cramps. It started after the fatigue & other systemic symptoms began, so I assume it's sarc-related. Neuropathic pain: the best relief I had came from Lyrica & Cymbalta combined, for 2 years. Then last year I slid into a severe depression & my doctor felt I needed a stronger antidepressant than Cymbalta, so I changed to Lexapro. Well, the depression got better, but the neuropathic pain has just been much worse. So a couple of months ago I switched back to Cymbalta. Within a few days I could tell a difference in

my feet; unfortunately, my dry eyes got much worse. I was already on Restasis drops, OTC artificial tears, ointment at night & had gotten my tear ducts plugged last fall. Now, in spite of all that, I was having painful gritty sensations, blinking almost constantly & wearing sunglasses indoors. My opthamalogist discussed Lacriserts, which are little capsules that you poke into the lower lid every day. They gradually dissolve, releasing fake lubricant into the eye. I already poke myself in the eye all the time just putting in eye drops, even when I use the mirror, so I wasn't too keen on that. I decided to stop the Cymbalta first, after talking it over with my shrink. That seems to have helped, & I'm back on Lexapro. My feet are complaining bitterly, but I can stand that better than the eye pain. I didn't have that much trouble with my eyes when I took Cymbalta before, but my eyes have gotten

drier in the last year anyway, so I guess restarting the Cymbalta just was the last straw. Unless you have very dry eyes, the Lyrica & Cymbalta is a good combination for neuropathic pain. Well, it's late. Hope all you Mothers & mothering women out there have a lovely Mom's Day! Ramblin' Rose A merry heart is good medicine. Proverbs 17:22Get Free (PRODUCT) RED™ Emoticons, Winks and Display Pics. Check it out!

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Christi,

I am so glad that this issue comes up and that each time, we all learn something new. Your OD is correct in having you give up the contact lenses. I can't tell you how many times we had patients come in with corneal abrasions caused by contact worn with dry eye problems. Not a good combination at all-- many times these would end up as corneal ulcers-- and that is misery. Not to mention it really screws with your permanent vision. The cornea is the refractive "mirror" surface and if that "mirror" has a flaw, then your vision is warped. Corneal ulcers actually end up scarring the cornea, so the mirror gets a blind spot --just like you'd see if you took steel wool to a mirror.

Several things happen with sarc-- you can end up with iritis or uveitis, or with granulomas on the optic nerves. The lacrimal glands that line the eyelids and conjunctiva, which goes from the iris up under the lid and to the eyelashes-- are lined with tiny lacrimal glands. If you have inflammation, those glands enlarge, but aren't able to produce the tear fluid to lubricate the eyes.

Again, I can't stress enough-- SEE AN MD --OPHTHALMOLOGIST FOR YOUR EYES! OD'S are great with basic eye health, and their primary job is to get your prescription for your lens (refractions) done. The do a great job making sure they don't see the "normal" signs of glaucoma- ie. increased intra-ocular pressure (the puff test), and checking the retina to see if you have a proliferation of blood vessels that may show that you are dealing with diabetes-- but when it comes to the really complex issues of the optic nerves and warping of the macula or retina as well as the white cells that can be floating inside our eyeballs- that show eye diseases-- they aren't trained in that. Not in the way an MD- OPHTHALMOLOGIST is.

I was fortunate enough to have managed a Ophthalmic Medical Practice, and it was the MD I worked for that discovered my sarcoidosis. (He was hoping we had found the reason for my severe chronic back pain-- which we did, but he was thinking anklyoysing spondalytis- and long-shot, sarcoidosis...). It was with his practice that I ended up getting my JCAHO (Joint Commission Allied Health Personnel in Ophthalmology) certification. I had to let it go when I got sick and could no longer work there-- but this doc has and still is one of my greatest sources of information for sarc as well as my general health. So, if I go off in tangent on this issue-- it's because I know the signs and I'd rather not have any one of us suffer the loss of sight-- plus it still is my passion.

You seriously need to be on Restasis along with artificial tears however often you need them-- to keep the eyes healthy. And yes, it is the sarc- and maybe hormones secondary (so we're getting older-- ) but hey, it's one of the least expensive parts of this disease to treat!

Sincerely,

Tracie

NS Co-owner/moderator

this & thatThanks to all for the good thoughts. Naa Koshie, it's actually clouds I've always wanted in my bedroom! The tricky part is that I will be gone from 6/2-6/6, which is when I will need to be finishing up the move & cleaning this house. I'm going to San for my granddaughter 's h.s. graduation. I'm so excited for that, but a little worried about getting everything done here. Some of my church family are going to help with packing & cleaning & my kids and niece will do most of the

rest. Re: muscle spasms. Marla, that is why I started taking quinine several years ago & it worked great. Now that quinine is off the market, I just have to put up with these weird cramps. They come in my elbows, the outside of my ankles, my side when I reach behind me, places that I never used to get cramps. It started after the fatigue & other systemic symptoms began, so I assume it's sarc-related. Neuropathic pain: the best relief I had came from Lyrica & Cymbalta combined, for 2 years. Then last year I slid into a severe depression & my doctor felt I needed a stronger antidepressant than Cymbalta, so I changed to Lexapro. Well, the depression got better, but the neuropathic pain has just been much worse. So a couple of months ago I switched back to Cymbalta. Within a few days I could tell a difference in my feet; unfortunately,

my dry eyes got much worse. I was already on Restasis drops, OTC artificial tears, ointment at night & had gotten my tear ducts plugged last fall. Now, in spite of all that, I was having painful gritty sensations, blinking almost constantly & wearing sunglasses indoors. My opthamalogist discussed Lacriserts, which are little capsules that you poke into the lower lid every day. They gradually dissolve, releasing fake lubricant into the eye. I already poke myself in the eye all the time just putting in eye drops, even when I use the mirror, so I wasn't too keen on that. I decided to stop the Cymbalta first, after talking it over with my shrink. That seems to have helped, & I'm back on Lexapro. My feet are complaining bitterly, but I can stand that better than the eye pain. I didn't have that much trouble with my eyes when I took Cymbalta before, but my eyes have gotten drier

in the last year anyway, so I guess restarting the Cymbalta just was the last straw. Unless you have very dry eyes, the Lyrica & Cymbalta is a good combination for neuropathic pain. Well, it's late. Hope all you Mothers & mothering women out there have a lovely Mom's Day!

Ramblin' Rose

A merry heart is good medicine. Proverbs 17:22Get Free (PRODUCT) RED™ Emoticons, Winks and Display Pics. Check it out!

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Tracie, Thank you so much for the info. I have an appointment set up to the opthamologist next month. He's actually a neuro opthamologist. He (my optometrist) told me that I already did a little bit of damage to my eyes by not dealing with my facial palsy when it had my eyes frozen open. I was supposed to be wearing an eye patch over my eye to sleep and go outside (because it was snowing), and I didn't. And, yes, I was supposed to be using Lacralube at night, too. He was going to put me on Restasis, but he said that it takes at least a couple of months to know if it will work, it doesn't "fix" the problem right away. He told me to take the Omegas, because those are supposed to help with tear production and dry eyes. So, I'm taking the Omegas. I'm learning how serious this disease is, and how to better take care of myself instead of helping it destroy me. The whole eye thing is when they just thought I had Bell's Palsy, not NS. But, thank you,

again, for the info! Christytracie feldhaus wrote: Christi, I am so glad that this issue comes up and that each time, we all learn something new. Your OD is correct in having you give up the contact lenses. I can't tell you how many times we had patients come in with corneal abrasions caused by contact worn with dry eye problems. Not a good combination

at all-- many times these would end up as corneal ulcers-- and that is misery. Not to mention it really screws with your permanent vision. The cornea is the refractive "mirror" surface and if that "mirror" has a flaw, then your vision is warped. Corneal ulcers actually end up scarring the cornea, so the mirror gets a blind spot --just like you'd see if you took steel wool to a mirror. Several things happen with sarc-- you can end up with iritis or uveitis, or with granulomas on the optic nerves. The lacrimal glands that line the eyelids and conjunctiva, which goes from the iris up under the lid and to the eyelashes-- are lined with tiny lacrimal glands. If you have inflammation, those glands enlarge, but aren't able to produce the tear fluid to lubricate the eyes. Again, I can't stress enough-- SEE AN MD --OPHTHALMOLOGIST FOR YOUR EYES! OD'S are great with basic eye health, and their primary

job is to get your prescription for your lens (refractions) done. The do a great job making sure they don't see the "normal" signs of glaucoma- ie. increased intra-ocular pressure (the puff test), and checking the retina to see if you have a proliferation of blood vessels that may show that you are dealing with diabetes-- but when it comes to the really complex issues of the optic nerves and warping of the macula or retina as well as the white cells that can be floating inside our eyeballs- that show eye diseases-- they aren't trained in that. Not in the way an MD- OPHTHALMOLOGIST is. I was fortunate enough to have managed a Ophthalmic Medical Practice, and it was the MD I worked for that discovered my sarcoidosis. (He was hoping we had found the reason for my severe chronic back pain-- which we did, but he was thinking anklyoysing spondalytis- and long-shot, sarcoidosis...). It was with his practice that I ended up getting

my JCAHO (Joint Commission Allied Health Personnel in Ophthalmology) certification. I had to let it go when I got sick and could no longer work there-- but this doc has and still is one of my greatest sources of information for sarc as well as my general health. So, if I go off in tangent on this issue-- it's because I know the signs and I'd rather not have any one of us suffer the loss of sight-- plus it still is my passion. You seriously need to be on Restasis along with artificial tears however often you need them-- to keep the eyes healthy. And yes, it is the sarc- and maybe hormones secondary (so we're getting older-- ) but hey, it's one of the least expensive parts of this disease to treat! Sincerely, Tracie NS Co-owner/moderator this & thatThanks to all for the good thoughts. Naa Koshie, it's actually clouds I've always wanted in my bedroom! The tricky part is that I will be gone from 6/2-6/6, which is when I will need to be finishing up the move & cleaning this house. I'm going to San for my granddaughter 's h.s. graduation. I'm so excited for that, but a little worried about getting everything done here. Some of my

church family are going to help with packing & cleaning & my kids and niece will do most of the rest. Re: muscle spasms. Marla, that is why I started taking quinine several years ago & it worked great. Now that quinine is off the market, I just have to put up with these weird cramps. They come in my elbows, the outside of my ankles, my side when I reach behind me, places that I never used to get cramps. It started after the fatigue & other systemic symptoms began, so I assume it's sarc-related. Neuropathic pain: the best relief I had came from Lyrica & Cymbalta combined, for 2 years. Then last year I slid into a severe depression & my doctor felt I needed a stronger antidepressant than Cymbalta, so I changed to Lexapro. Well, the depression got better, but the neuropathic pain has just been much worse. So a couple of months ago I switched back to

Cymbalta. Within a few days I could tell a difference in my feet; unfortunately, my dry eyes got much worse. I was already on Restasis drops, OTC artificial tears, ointment at night & had gotten my tear ducts plugged last fall. Now, in spite of all that, I was having painful gritty sensations, blinking almost constantly & wearing sunglasses indoors. My opthamalogist discussed Lacriserts, which are little capsules that you poke into the lower lid every day. They gradually dissolve, releasing fake lubricant into the eye. I already poke myself in the eye all the time just putting in eye drops, even when I use the mirror, so I wasn't too keen on that. I decided to stop the Cymbalta first, after talking it over with my shrink. That seems to have helped, & I'm back on Lexapro. My feet are complaining bitterly, but I can stand that better than the eye pain. I didn't have that much trouble with my

eyes when I took Cymbalta before, but my eyes have gotten drier in the last year anyway, so I guess restarting the Cymbalta just was the last straw. Unless you have very dry eyes, the Lyrica & Cymbalta is a good combination for neuropathic pain. Well, it's late. Hope all you Mothers & mothering women out there have a lovely Mom's Day! Ramblin' Rose A merry heart is good medicine. Proverbs 17:22Get Free (PRODUCT) RED™ Emoticons, Winks and Display

Pics. Check it out! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.