Pls read; kindly respond! Mnths after steroid use, acute burning & stinging persist!

[Gerri55455]

llo! I'm a new member would appreciate any suggestions! In May 2013, I was prescribed FML for ocular inflammation. Right from the first drop, the burning, stinging and watering were fierce. Looking back, this was certainly compounded by my using Restasis at the same time. Still, Dr. urged me to finish course of treatment (2X/day/2 wks; then 1X/day/2 wks). At the end of the 4 wks, my eyes felt wonderful. I was hooked.

Couple of mnths later I began another course of FML. 4 days into treatment at 2X/day, I just couldn't tolerate the side effects. Thinking I'd read the instructions well enough, I continued for another 3 days at 1X/day so as to taper off. That's when my walk through hell began. The burning, stinging and tearing wouldn't stop. I was confused. I had, after all used FML successfully once. So I re-read the package insert several times and my attention was caught by: "The dosing of FML® suspension may be reduced, but care should be taken not to discontinue therapy prematurely." The injunction "not to discontinue therapy prematurely" is repeated several times in the package insert and also on the package itself.

I returned to see the Dr. who gave me Alrex to treat the apparent allergic reaction. That did nothing for me. I went to see another Dr. who said: "well, if you believe your problems are caused by discontinuing FML prematurely, why don't you go back to FML and finish the course of treatment as stated?" I did just that. That made my eyes even worse. So I returned to the other Dr. who, to avoid all preservatives, prescribed unpreserved Prednisolone + Healon (3X/day/3 wks; then 2X/day/3wks; then 1X/day/3 wks. At the end of the 9 wks my eyes were burning like a raging fire. The stinging was killing me.

Six days ago, I began using autologous serum tears. I already feel a little bit of relief but I really would like to know whether anybody had been through a similar experience and found something that was able to resolve the problem. In the last year, I have consulted a lot of message boards and come across patients who had used FML for a week; for 10 days; for 14 days … (less than 3-4 wks) who had the same persistent and lingering symptoms I have. I so wish I'd never touched ophthalmic steroids but keep hoping that I will find a solution to my problem. Can anyone suggest something else that I can use alongside the serum? I've read about Lacrinorm; Solcoseryl etc. Anything to take away the acute burning and stinging!

Thank you all for reading!!! Thanks so much for any suggestions.

[littlemermaid]

Hello, Gerri, hope the autologous serum is healing your eyes and that eye protection day and night is bringing you more comfort.

Did you have any eye problems before the dacryocystitis? You used an oral fluoroquinolone which looked like it cleared it, but then started FML and Restasis in May? Why both? Were you recommended tear substitute eyedrops and any kind of cleaning regime after the infection? It's a worry that you only mention Healon HLA drops as a later addition.

You have had so many random inflammation-control drops prescribed by different people. For sure, this affects the eye surface and their purpose is controlling urgent inflammation rather than healing. Of course that was a lot of preservative http://www.youtube.com/watch?v=XOAkmt7RTYk.

Why on earth do they prescribe preserved drops for a stinging burning reaction to eyedrop ingredients, most likely preservatives. We were given preserved anti-allergy drops too after serious red-eye reaction to preserved chloramphenicol ointment. Also a GP prescribed oral Loratadine for a systemic reaction (dermatographism) she had to a topical antibac/steroid combo they gave, but he did not discontinue or question the 6wk strong doses.

So relieved that you're feeling better on autologous serum. Maybe real healing would be from gentle lubricants and eye protection, especially at night (see how Rebecca suggests wraps and masks in her posts and http://www.dryeyezone.com/), as long as there's no more infection. Cystitis is a yeast? does diet help? Did you have any eye troubles to address before the infection? Is it worth doing gentle cleaning and warm compress? or do you need cool compresses sometimes?

[Gerri55455]

Dear littlemermaid,

Did you have any eye problems before the dacryocystitis?

Thanks so much for responding. My dry eye problem began in 2009. I was told it's age/hormone related (I turn 50 end of this year). It's also most likely diet-related (I've struggled with IBS for decades). The first two years I saw rather conservative cornea specialists at a research university hospital who would not prescribe any steroid. They advised warm compresses, refresh tears, restasis, lower puncutal plugs ... none of which helped much.

Then in late 2010 I went to a different specialist who gave me a sample of Alrex. I did not feel any significant improvement. So the specialist prescribed FML for a month (Jan/Feb 2011). I didn't feel it was worth the trouble. Then I had a dacryocystitis in March '11 and was prescribed Cipro (Ciprofloxacin) for 10 days and Lotemax for a month. While the dacryocystitis healed, I did not feel the Lotemax did much for my dry eyes.

So I switched to Doxy taking 100mg for four months (April-July 2011). Doxy was my silver bullet but it messed up my stomach pretty badly. For two years between July 2011 and May 2013, I made lifestyle changes that acutally allowed me to cope with the dry eyes quite well (religisouly doing the warm compresses and refresh tears along side Restasis, never working on the computer before 2-3pm--my eyes are drier in the morning, etc).

But when I had a flare-up in May 2013, I decided to give steroids another try. By then, the older and more conservative specialist at the university hospital where I go had retired and been replaced by a younger specialist who replaced my lower punctual plugs (they'd since fallen out), and prescribed FML alongside the Restasis that I was using. When I pointed out to him that the package insert for Restasis states: "Increased tear production was not seen in patients currently taking topical anti-inflammatory drugs or using puncutal plugs," he said: "I don't know why they write that. Research has shown that it works." When I returned to the clinic complaining of the burning and stinging that I was feeling, the cornea fellow attending the doc that day said that using Restasis alongside FML helps take away the latter's burning and stinging. I disagreed and pointed out that the package insert for each of these drugs states burning and stinging are side effects of each drug so using both at the same time would only increase the side effects.

To cut a long story short, my first course of FML was indeed successful. Why? Go figure (perhaps because I'd used it alongside Restasis. Yet for those four weeks, my eyes had stung and burned and watered so much, that I'd been unable to do anything at all. So the second time around, I lost patience after four days.

Autologous serum tears are helping but I'm using 20%. I'm looking for a compounding pharmacy that might make 100% in the US upper midwest. But even at the Mayo clinic which is a two-hour drive from my house, they only make 20% serum. the progress is slow but I'm glad to have found this site. Thannks again for writing. Cheers! ~Gerri

[No tears in ATL]

Restasis is brutal. It only works for a few (my doc says it is 50/50) and I think confidence in this drug is waning. Steroid drops, especially when not tapered down properly, can cause withdrawal symptoms, such as increased redness and burning (been there). Glad to see you are experiencing improvement with the serum drops.

[Max52]

Hi No Tears...in what way did you find restasis brutal? The way it felt when you put a drop in your eye, or some kind of long term negative side effect? I take it because it originally helped me a lot even though I don't think it's doing much good now. I just continue because it's possible my eyes would be worse if I stopped

Restasis is brutal. It only works for a few (my doc says it is 50/50) and I think confidence in this drug is waning. Steroid drops, especially when not tapered down properly, can cause withdrawal symptoms, such as increased redness and burning (been there). Glad to see you are experiencing improvement with the serum drops.

[Gerri55455]

Hi No tears in ATL,

increased redness and burning (been there).

Thanks for writing. What would you say helped you the most with the redness and burning? I agree that confidence in Restasis is waning. The drug is pretty expensive and it didn't prevent the terrible inflammation that I had in May last year which had me started on steroids. Serum drops are helping but progress is pretty slow. I guess I just have to be patient. I'm using 20% serum. Thanks again. Best,

~Gerri

[No tears in ATL]

Hi No Tears...in what way did you find restasis brutal? The way it felt when you put a drop in your eye, or some kind of long term negative side effect? I take it because it originally helped me a lot even though I don't think it's doing much good now. I just continue because it's possible my eyes would be worse if I stopped

Persistent burning and stinging ALL day and the redness was extreme! I am terribly sensitive to almost all drops so I would not use me as any type of benchmark. But, considering the amount of discomfort I experienced on restasis combined with the fact that the cyclosporine content is very low and not really effective on my severe dry eye, it just wasn't worth it to me. Insurance here in the U.S. typically will not cover it. At least, mine did not, and I have a decent medical plan. Cost benefit analysis said "no."

[Gerri55455]

Thanks again,

Persistent burning and stinging ALL day and the redness was extreme!

How did you manage to put the burning and stinging at bay? With the serum? Doxy was great for me before I messed up my eyes with steroids. Now it has no effect. I also read the advice you give to Jodywest. I think I should try Seabuckthorn oil and Krill oil (I haven't tried those). I have lower plugs (I had the top ducts plugged as well but my eyes watered way too much so I pulled the upper ones out). I have eliminated wheat and dairy from my diet but I think I need to look at my intake of omega 6. I take a teaspoon of Nordic natural omega at breakfast, a tablespoon of Flax at lunch and a tablespoon of hemp at dinner. There is some controversy around Flax but I haven't really figured whether to eliminate it altogether and continue with hemp alone. I do also need to get a humidifier but use a moisture chamber at night (trying to get one for the day). So these tips are all good management tips but right now, I'm in emergency mode so I've been looking at something more than the 20% serum I have. Thanks again. ~Gerri