Dry Eyes - Restasis

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 11/21/2008 8:19 AM (GMT -7)   

Hi Everyone,

Hope this posts finds everyone doing well. Just curious how many of you experience dry eyes? I have always had dry eyes, but let me tell you here of late they have been bad, I have had the ducts cauterized in the past to try to help, but that has not even been helping. Don't know if it is the cooler weather or what, but mine are just simply killing me.

I went to the ophthalmologist yesterday (again) and he started me on Restasis. I have seen the ads on TV, but know nothing more about it. Do any of you use it? I sure hope it brings some much needed relief. I can handle pain, but I'm telling you nothing is worse than eye pain. When my husband went to get the script filled for me the pharmacist also suggested I take Omega 3, says it helps considerably with dry eyes. So, I started that this morning too.

Anyway, hope everyone has a great weekend.

 

 

 

Melissa




Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/21/2008 10:03 AM (GMT -7)   
Hi Melissa,
 
Sure sounds like you have Sjogrens.  Have you been diagnosed with that? 
 
I've heard great things about Restasis.  My Sjogrens doesn't give me dry eyes.  So I haven't ever used it. But if I needed eye drops, I'd be buying Restasis.  I know there are a few others here who have used it. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/21/2008 11:11 AM (GMT -7)   
Hi there,
 
I also have the dry red eyes, and the redness seems to be worse in my right eye for whatever reason and I haven't had time to stop anywhere and pick up some eye drops.  Does anyone have any recommendations on drops? I have my eye exam in December and maybe the eye doctor will have a suggestion for me but until then I'm stuck using something otc.
 
Thanks in advance!

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 11/22/2008 11:36 AM (GMT -7)   
Hi Ladies,

Thanks for your replies. Yes, I have been diagnosed with Sjorens, my opthmologist cauterized my tear ducts hoping that would bring some relief. No go, it seems to be going from bad to worse. I'm sure do to the amount of inflammation in my body. I talked to my rhuemy about it at my appt last week, he told me to ask him about putting me on Restasis since it is a script, so I did last week. I got it filled and think I've been on it 3 days now, don't see much improvement, that's why I thought I'd inquire if anyone else was on it. Perhaps it takes awhile.

Ginny, with your Sjorens what type of symptoms to you experience? Dry mouth, skin, joint pain, etc? Just curious. I sure wish I could leave these dry eye part behind.

Momto, my opthmologist has me use Systane for over the counter eye drops, they are very good when I am not experiencing a major problem. They are pricey, but do a great job in comparision to some I have tried.

Thanks again, have a great weekend.
Melissa
Lupus - 1997  Fibro - 2001  Sjorens - 2007  Raynauds - 2008
Plaquenil, Imuran, Prednisone, Synthroid,Topomax, Effexor, Noroc, Prilosec, Xanex, Elidel, Restasis,


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/22/2008 12:05 PM (GMT -7)   
Hi Melissa,
 
I'm not sure if it takes a few treatments with the Restasis to kick in.  Hopefully someone here can help you with that question.  It's really frustrating go through all the procedures just to have them not work, isn't it? 
 
I'm a mystery, wrapped in a riddle, wrapped in an enigma..... I tested high positive for Sjogren's, but my symptoms are barely noticeable.  I think the one thing I suffer with most is dry mouth and sinuses.  But even those are so minor I don't even do anything about it.  I don't even get the swollen lymph nodes that most Sjogrenites get.  I did when I was first dianosed with Sjogrens, but over the past 7 years, the syndrome has really been a non issue for me. I can wear contact lenses for 14 or more hours without any eyedrops..... It almost makes me wonder if I was misdiagnosed?
 
I've had lupus related eye issues in the past and it's not fun.  I do empathise with you Melissa.  I sure hope you can find a treatment that works for you,
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/22/2008 5:44 PM (GMT -7)   
Hi Melissa,
 
That helps a bunch, thanks so much wink I was going to buy some visine but will look for the brand you suggested.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/25/2008 1:07 PM (GMT -7)   
Hi Melissa--
I have had dry eyes since childhood. Surprisingly, I can get very tearful during sad movies. At the eye doctors for my sjogrens/plaquenil exam, I read a little brochure on dry eyes that explaind that often people with sjogrens may also have excessive tearing because this type of eye wetness comes from a different type of response, where sjogrens dryness is a failure of the eyes to maintain wetness.

I had implants put in my ducts before surgery and they made my eyes more dry. And they hurt. On a gallium scan, my lacrimal glands and eyes were very lit up showing possible canceror sjogrens. I use the restasis religiously since the last eye doctor appointment because he said that I will lose my tear glands and then I wil have no tears at all.

He recommended absolutely NO over-the-counter products but gave me many many samples of Optive and he did say I could use the gel at night if I have to, but not at the time I use the restasis.

Restasis for me works instantly, but I have lots of inflammation and it is cyclosporine. IT is a rare but good response. Most people it takes months.

Evoxac, a pill used for people with sjogrens did alot to increase wetness in my eyes (it is mentioned in the literature that it can be helpful). I know many people here take it and have had improvement, for me esp. at night, to help get throughthe night. You might ask your rheumatologist about that. It also helped my gi symptoms by increasing moisture there.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 11/25/2008 5:19 PM (GMT -7)   
Hey momto3-I'm dealing with dry eyes right now, and my eye doctor said do not buy anything that says "gets the red out" on the box.  It will get the red out, but will continue to dry your eyes out as well-that works because it constricts the blood vessels in your eyes.  If you get over the counter drops, go with something that has no preservatives. Systane and Bausch & Lomb Soothe are 2 of the better OTC drops out there.  My doctor says you can never use too many eye drops, provided they aren't medicated.  I like both drops because they are very soothing.  The Soothe drops make your eye sight a little cloudy for about a minute and the Sustane ones don't, but I've found I have to put Systane in more often than the other.  Also, if you take a minute to close your eyes for about a minute after drops it seems to stay lubricated longer.  Hope this helps.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/25/2008 6:24 PM (GMT -7)   

Hi Tammy,

I did purchase the Systane and my mom always used something called artificial tears or refresh? they came in these little blue plastic tubes? I think they were by prescription for her dry eyes, anyway, there were so many different otc drops!  That does help, thanks so much!  Hopefully my eye doctor will know why my eyes get so red since I don't have allergies and they are never itchy.


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 11/26/2008 9:53 AM (GMT -7)   

Hi Marji,

Thanks for the information. Sounds like you too have had quite a time with Sjorens and dry eyes, sorry to hear that, but glad at the same time too have individuals who can relate. I'm glad you mentioned not to mix Restasis with over the counter drops, I had not done this up to now, simply because I was not sure. My Opth. never told me one way or the other, I go back to him a week from tomorrow to see how the Restasis is working and was going to ask then. I figured that it most likely was not a good idea simply because it would only water down the med.

The opth. tried to put the plugs in my tear ducts, is that the implant in which you are speaking? But my ducts were way to inflammed so he had to result to cauterizing them, to this point I have seen no improvement, and at times like you say it might have even made them worse.

I did speak to my Rhuemy about the Sjorens as well and asked if there was anything that he could prescribe that would bring some added relief because I also suffer from extremely dry mouth and if I'm not up due to my eyes, I'm up drinking water, no wonder we are always tired, eh? Because I also suffer from night sweats, as well as anytime I try to extert myself these days, to the point of loading the dishwasher I break out in a tremendous sweat and get over heated he is reluctent to prescribe anything additional because he says with these meds comes added sweating. One would think I am over weight and out of shape when I say when I extert myself I break out in a sweat, nothing could be farther from the truth. I am 5'2", weigh 122lbs, my Rhuemy says it is because the lupus is so active.

As the days go on I am seeing some improvement with the Restasis, I guess it just takes time. I am hopeful that by the time I go for my follow up appointment next week things will be looking good.

Again, thank you so much for sharing, it has helped me a lot.

Happy Holidays,

Melissa


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 11/27/2008 6:08 PM (GMT -7)   

Hey Melissa

I am sorry that I have been so long in responding to your post.

When I was told that I  had dry eyes, an opthamolist told me that it was due to age, that women tend to get dry eyes when they get older.  *&^ and a few other words I could say. nono

I visited a rheumatologist a little over three months ago, and was diagnosed with Sjogren's Syndrome.  He sent me back to my opthamolisist, who prescribed restasis.  I  have not ever had any eye drops to work for me, but tried them.  and after a month, for me, it worked.  I had no tears.  None.  even onions couldn't make me cry.  but restasis works for me.  I felt some real tears that for so many years, and I had no tears at all.  And because of the restasis my night vision has increased, and I am really thankful for that, because it was hard for me to drive at night.

My skin is extremely dry, and my mouth also.  i look I have scales.  I have to have a cup of something to drink all the time.  my throat dries out and makes me cough.

I was diagnosed by my gp to have Lupus, because of results of the blood tests that were done.  My gp sent me to a rheumatologist, and he diagnosed me with sjogren's.  This is one of the best things that has been happen to me in a while.  He did say that I would still need to take plaquenil, but that he was not sure I had Lupus.  and I am like some others who think that Lupus seems to be an elusive diagnoses.

I don't know that my joint pain is caused by Lupus, Sjogren's, fibromyalgia, or some other connective tissue disease.  at the moment, and for a few weeks, I have been in a flare, but what kind???  If it isn't lupus what else is it.  so wait I guess.  but lots of stuff to take him this time.  and I want some answers.

muscle pain in my stomach area and right side and back muscles, so bad that I cannot sit erect for the most of the day.  could only stay at my daughter's house during thanksgiving dinner today for an hour and had to go back home. 

Sorry this post is so long. 

I think your restasis will see some improvement soon.  and I tend to think about not using over the drugs in your eyes.  Restasis will work.  Just takes some time.

Hester 

 


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 11/27/2008 6:36 PM (GMT -7)   
Hi Hester,

Thank you so much for your input, it definitely seems as though Restasis has been a godsend for you. I am beginning to see improvements, I have been on it for a full week now and see marked improvement. Before my eyes literally hurt SO BAD, as you well know we Lupies can are tough and can handle pain, we are used to it, it's second nature right, but when my eyes hurt to that extent and I can't get any relief I just can't handle it. The pain, burning and dryness was so bad that it would literally wake me from a sound sleep. The last couple of nights I am sleeping without being awoken from eye pain, ah, what a relief that is.

It sure seems you have had more than your dose of problems and such by looking at your signature line. My goodness, lupus, cancer, heart problems, sjorens, etc. you have definitely paid your dues. I totally understand what you are saying in reference to not know what syndrome or disease is causing what issues at what time. I too supposedly have fibromylgia, so there are times when I don't know if the pain is lupus or fibro, and now as I learn more about sjorens, I realize some of it could be that as well. And like you said, I really don't care which one is causing it, I just want them to fix it!

I too have to have a drink near me all the time these days, my skin is always dry, doesn't matter how much lotion I put on, it is never enough. I all can be overwhelming at times can't it?

I hope you had a good Thanksgiving, thanks again for your input and the information. I appreciate all the info I can get.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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