Author Topic: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !  (Read 1211 times)

happylife

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Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« on: April 10, 2018, 12:08:53 AM »
Hi All,

I understand from my opthalmologist that Restasis is an immunesuppressant and antiinflammatory drug. This will prevent further damage to tear glands and is supposed to be used lifelong in sjogren patients.

So i would like to hear from the sjogren patients on this forum.

1. Since how many years have you been using restasis?
2. If you have stopped using it, please explain why did you stop, how many years ago did you stop using and how has been your dry eyes since?

Thanks

Liz D.

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #1 on: April 10, 2018, 06:15:43 AM »
I only used it for a short time.  Only weeks.  I found it gave me a burning sensation that I didn’t like.  I have since had punctual plugs and then cauterization done and that has helped my eyes tremendously.

Liz D.
54 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Vitamins, calcium, flaxseed oil

happylife

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #2 on: April 10, 2018, 06:55:57 AM »
Hi,

How often do you use eyedrops or eye gel?

thanks

WhatYouSjo

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #3 on: April 10, 2018, 07:56:21 AM »
1. Since how many years have you been using restasis?
2. If you have stopped using it, please explain why did you stop, how many years ago did you stop using and how has been your dry eyes since?

1. ~5 years
2. I've continued using it.

Restasis has proven quite helpful for me; my Schirmer's test increased noticeably shortly after I started. I'm in a better place today than I was before I started using it and almost never use over the counter eye-drops. I also have not experienced the burning that many others describe (though I do experience some burning with Xiidra). My theory is that it is more helpful the earlier it is used; I started right after my dry eye escalated to needing regular eye drops.

Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

cccourt1942

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #4 on: April 10, 2018, 08:06:31 AM »
I've been on Restasis for close to 4 years.  My lacrimals were atrophied by the time I was diagnosed.  I haven't shed a tear in nearly 30 years.  After a couple of years on Restasis, at sad moments, real or movie, I do feel fluid pooling in my eyes.  I take it twice a day.  It burns my eyes EVERY night.....summer or winter. 

The ophthal gave me a cortisone eyedrop Rx when he initially Rxed it.  I was to use it X amount of time (I think before using the Restasis---can't recall) for a month.  That did work with the burning.

At night when my eyes burn after application, I was instructed to use my OTC drops after 10 minutes.  For me, this works too.  I've NEVER understood why my eyes burn with the drops at night.

I didn't gauge progress on how my eyes "felt", or "looked" or anything to do with me.   I took my ophthal's word for it.  He stated my eyes looked like new eyes after a year.  The first year I started with him, my eyes were so bad, I saw him every three months. Now I see him annually.  In addition, I was thankful he didn't tell me my eyes had zero covering (other than the OTC drops I used===and had used for decades.)  I was instructed about thirty years ago by eye doctor to use a drop which comes in individual vials.  I did.   

When you take Hydrochloroquine/Plaquenil, you must have a test performed by the ophthal to continue use of the Hydro/plaq.  Someone more informed than I am can explain why.

Again, I am old. I believe I can take the plaquenil drug till I die.  I have read concerns of young people who are Rxed it in 30s, early 40s who are concerned. It IS a real concern.  Don't dismiss asking about the two drugs.

The first year I took the drug, I filled the Rx by the month---to see if it a) helped and b) I could tolerate it.  It was expensive.  The last two years ..two FULL years, I have used ONE Rx for a 3 month period in one full year.  In my "live people" Sjogren's group, there are two others who experience the exact, same usage.  I use it...I use full "drops"...and it just lasts.  I think I receive 5 boxes of the drug for a 3 month period.  May be 6. 

Courtenay
« Last Edit: April 10, 2018, 08:10:27 AM by cccourt1942 »
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Carolina

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #5 on: April 10, 2018, 08:18:04 AM »
1.  I used Restasis for 8 years.
2.  I stopped using it when we moved and my backlog of Restasis was damaged by heat in storage.

I didn't miss it when I stopped taking it.

My understanding is that it is only effective about 50% of the time.

Regards, Elaine
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SunshineDaydream

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #6 on: April 10, 2018, 10:45:02 AM »
I took Restasis for 1-2 years. It worked somewhat for me but was not sufficient. I still had to keep running to the ophthalmologist to get steroid drops too often. Getting top and bottom punctal plugs made a big difference. With the plugs, I stopped using the Restasis and cut down on frequency of use of OTC drops, too.

For those of you who say Restasis stings, try keeping it in the refrigerator. I found that reduced or eliminated stinging and made the med more tolerable.

Following up on cccourt's comment re: eye exams while on plaquenil, that is to detect plaaquenil toxicity which is damage to the retina. It's very important to monitor eyes while on plaquenil and make sure your dosage is appropriate / within current guidelines.
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Kristina09

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #7 on: April 10, 2018, 11:59:42 AM »
I?ve never used restasis. I have Sj?gren?s but since I?ve been on plaquenil for my RA for years before my Sj?gren?s diagnosis I haven?t had a horrible time with my eyes while on the med. I get by with just artificial tears.

SjoGirl

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #8 on: April 10, 2018, 02:47:31 PM »
Hmmm, I never heard of Restasis being described as an immunosuppressant and wonder if that is correct.

I have used it for probably 3-4 years and found it to be quite helpful. I had not cried a tear in over a year and missed it more than I thought. I also have punctal plugs.

FYI dry eye can be the result of various causes, lack of sufficient tear production (which has different causes), less tear film (which means your eyes don't hold onto the tears that are produced, etc. It is good to ask your doctor why your eyes are dry because treatments can vary based on cause or causes.
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WhatYouSjo

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #9 on: April 10, 2018, 04:15:27 PM »
Restasis contains a very small dose of Cyclosporine, which is an immunosuppressant used for preventing organ transplant rejection and to treat various autoimmune diseases like RA, psoriasis, and Crohn's. It works by lowering activity of T-cells. Wikipedia link for those interested.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

jazzlover

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #10 on: April 10, 2018, 05:25:40 PM »
I've never used it. I was diagnosed 10 years ago.

I found great success with punctal plugs which have been in place about 2 or 3 years. They are the semi-permanent.
« Last Edit: April 10, 2018, 05:27:11 PM by jazzlover »
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

eye2dry

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #11 on: April 10, 2018, 09:32:51 PM »
  I used Restasis for 4 to 6 months with no help to my dry eyes.
  What did help was

Lower tear ducts cauterized shut in 2010

Began Xiidra eye drops nearly 2 years ago...use it 2 x a day.

I rarely have to use OTC drops in my eyes....I can sleep right through the night too.


Shelly
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lorigacc

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #12 on: April 11, 2018, 05:51:02 AM »
I used Restasis over a 3 year period.  I never really saw a big difference in how my eyes felt, and it continually burned my eyes.  When I finally gave up on it, I went to a different eye doctor, cause my regular doctor was out of the office that day. She put me on Xiidra and within days, my eyes felt so much better. I use the Xiidra twice a day, and at bedtime I use Refresh PM which is a thick ointment that coats my eyes. Both of these regimens have been working..so I will stick with them. 
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   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

markt

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #13 on: April 11, 2018, 09:29:14 AM »
I haven't shed a tear in nearly 30 years.  After a couple of years on Restasis, at sad moments, real or movie, I do feel fluid pooling in my eyes.  I take it twice a day.  It burns my eyes EVERY night.....summer or winter. 
Courtenay

Goodness!  In that time has any of your OD/MD types suggested Scleral or PROSE lenses?  They essentially create a prosthetic ocular environment with a sterile saline solution that is held against your eyes by the actual lenses (doing for your eye what your lacrimal gland cannot).  Granted some of us need them more than others...  The OD at Johns Hopkins highly recommended those of us with profound dry-eye go this route, and that "we don't have to suffer."   Any who, just curious if anyone has turned you on to trying those.  My ophthalmologist is trying to see how well they can get me using the Restasis/Ointment regimen before entertaining that...  it is always nice to know there are other options that can help!  That said... most OD/MD's will tell you, au natural (no lenses) is the best route if your eyes cooperate using conventional treatment.

irish

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Re: Restasis usage poll - REQUEST ALL OF YOU TO REPOND !
« Reply #14 on: April 11, 2018, 09:05:13 PM »
Some people have lots of burning and the protocol talked about on this forum is that using a preservative free eye drop to moisturize eye 15 ton 20 minutes before and 20 min after the Restasis can help a lot. You might want to check into this. Good luck. Irish