Author Topic: I need help with dry eye treatment ideas  (Read 476 times)

Carebear

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I need help with dry eye treatment ideas
« on: February 12, 2020, 03:40:17 PM »
Dear Sjogren's friends,

I have lived with seriously dry eyes for a couple of decades now.  But nothing compares to the pain I have felt in the last few months.

Now I am even getting stabbing pain in my eyes, along with the typical burning, gritty feeling.  It doesn't matter how many eye drops or eye gel I use daily either.  I can hardly open my eyes right now. My vision is blurred.  I am desperate.ppl

Oh, and I use warm compresses, and my lower ducts were cauterized closed several years ago. The opthamologist checked them a few months ago to make sure they were still closed. I only use preservative free eye drops. And I use Restasis twice daily.

I see the opthamologist again next week.  Can anyone offer me possible alternatives to treating this dryness, so  I can present this to him?  If it matters, I live in Canada. We may not have options here that are available elsewhere.

Thank you everyone.  I feel so fortunate to have such a huge resource here. I would be lost without you.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

irish

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Re: I need help with dry eye treatment ideas
« Reply #1 on: February 12, 2020, 08:53:43 PM »
I'm sorry that I don't have any ideas, hopefully someone will come on with some suggestions for you. I do want to suggest that you ask you dr if he has checked you for abrasions or ulcers on the cornea. Also, some people have issues with the area where the optic nerve enters the eye,.

I assume you are being checked for glaucoma and cataracts. There are several new eye drops that are out also. I don't have the name for them. Again, maybe someone will come along who is familiar with them. I would assume that your eyes are really dry from Sjogrens. Also, it occurs to me that after long use of Restasis it might be drying out your eyes.

I have been on Restasis many years..about 14 years and I am not using it as often for some reason. I still have some dryness but don't find myself following the regime like I did. I always think it possible that some of our treatments can turn against us on occasion.I hope that you are using the eye drops with the carboxymethylcellulose. Any eye drop with any preservative is going to really dry and burn your eyes. I hope you can find some comfort. Irish

araminta

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Re: I need help with dry eye treatment ideas
« Reply #2 on: February 13, 2020, 03:13:13 AM »
I have no idea what could be causing such pain for you, Carebear, but as I think Irish is suggesting,  we can become allergic to medications we have been using safely for several years, that might be worth considering. 

Someone here was using moisture retaining spectacles - not sure who it was - would those be worth considering too?

I'm so sorry you're having to put up with this.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

araminta

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Re: I need help with dry eye treatment ideas
« Reply #3 on: February 13, 2020, 03:17:35 AM »
PS:   I notice you posted recently about ocular hypertension - that too might be playing a part.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Maria3667

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Re: I need help with dry eye treatment ideas
« Reply #4 on: February 13, 2020, 04:58:50 AM »
Hi Carebear,

Sorry to hear about your situation!

I was in pretty much the same shape you describe last year.

Desperately I searched for a relief and finally found some in a medical paper in which an American opthalmologist claims he cures patients like us using testosterone eye gel on the eyelids (NOT in the eyes!).

My opthalmologist prescribed it for me off label as even Restasis couldn't cure the pain (it took care of the infection, but intensified the dryness). Now I'm doing so much better  :) :) :) !

Good luck!
« Last Edit: February 13, 2020, 05:00:27 AM by Maria3667 »
52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

markt

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Re: I need help with dry eye treatment ideas
« Reply #5 on: February 13, 2020, 04:47:34 PM »
Use bandage contacts w/ lubricating drops to give the cornea/surface a break from inflammation and mechanical trauma of blinking.  You can use restasis in conjunction with this and punctual plugs.  Works great!

Beyond that, RegenerEyes was very healing/helpful.  Its amniotic fluid extract.

Lacripep is what we all really need; it is in late stage trials (which I participated in.)  Google tearsolutions and read about the trial on their Facebook webpage.

Good luck!  Mark

ohiolady

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Re: I need help with dry eye treatment ideas
« Reply #6 on: February 13, 2020, 04:59:32 PM »
Carebear,

My ophthalmologist has his autoimmune patients use 4 times daily. Maybe that will help. I hope so!

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Emics

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Re: I need help with dry eye treatment ideas
« Reply #7 on: March 21, 2020, 06:26:24 AM »
Carebear, Restasis is 0.05% ciclosporine. There is 0.1% ciclosporine, in my contry (Spain) it is called Ikervis.
It made a great difference when I started (once a day at night).
I hope it will be useful for you.

Scottietottie

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Re: I need help with dry eye treatment ideas
« Reply #8 on: March 21, 2020, 10:48:57 AM »
Hi  :)

I sadly developed an extreme sensitivity to restasis. I used it in a gel form. It certainly helped me produce tears. I didn't even realise I was having a problem with it until I went to visit my daughter for a long weekend and I forgot to pack it.

by the end of the weekend my eyes were less painful than they had been for months. OK - they're not perfect. They need lubricant. The gel made them feel like I had lemon juice in them instead of tears. The lids were puffy and red.

I'm not suggesting that you have a sensitivity but just thought I'd share this experience.

Take care - Scottie
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deeindiana

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Re: I need help with dry eye treatment ideas
« Reply #9 on: March 21, 2020, 04:55:04 PM »
I hope you let us know what the doctors suggested for your dry eye. I'D love to hear!
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...