Just diagnosed with SLK - seeking others with this disease

[PeachesW]

Hi Everyone,

I was just diagnosed with SLK a little over a month ago but the symptoms started in August. At first I was diagnosed from my primary care physician with pink eye and the drops prescribed didn't work. Then I saw an Optometrist who said I had severe dry eyes (tears evaporate in 3 seconds, not the normal 15) and was recommended 2 Systane products. That still didn't work so by the time I went to see an Ophthalmologist, my upper eyelids were hard and the skin was flaking off. I was then diagnosed with SLK and given Tobramycin steroid and antibiotic drop, 4x a day. Well that made it feel great. Although over the 2 week period the symptoms gradually came back. I was then switched to Lotemax and 3 days into that I was back to where I started with the symptoms. I went back (saw another Doctor in the practice who seemed more knowledgeable and compassionate) and he put me back on Tobramycin drop 3x a day and Tobradex ointment at night. I also got Tranquil eyes goggles I use at night and now take Krill Oil daily to help the balance of my tears. In addition I use both Systane Balance and a Non-preservative drop about every hour.

So now I'm 2 weeks into that treatment and the symptoms are coming back. I have also cut out driving to help with the strain on my eyes.

I am not at the point of total frustration. I have had blood tests (negative for Thyroid problems and Sjogrens), allergy testing (both prick and intradermal), wear goggles, take krill oil supplements. I have spent well over $1,000 in less than 2 months on doctor appointments, prescription medicine, over the counter drops, goggles and supplements...and yes, I have insurance. I am at the point where I can't work a full 5 day work week and need to speak to my boss about this. I'm 27 and in perfect health. I am going back to the Ophthalmologist in the morning. They have been great with seeing me immediately but this is turning into a weekly occurrence.

I was wondering if any other people have any suggestions or can tell me what treatments have worked for them.

Thank you everyone in advance for taking the time to read this and for your help.

[PeachesW]

Update: I got punctal plugs put in on Friday. They are the ones made from silicone and collagen which will flush through my tear ducts within 2-3 months. So far, so good. I haven't had any excess tears and have felt okay. I am now on stronger steroid drops, prednisolone, hoping that will bring down the inflammation.

I meant to say I was now at the point of complete frustration in my first post. And really hoping to hear from anyone with their advice or experiences in this department.

Thanks!

[PAllen]

Hi Peaches. I also have SLK. I found relief from all 4 ducts being plugged and from bandage (soft) contacts. refresh PM at night, and cold compresses and goggles and preservative free Systane drops during the day helped me survive until we hit upon soft contacts to keep the inflamation down. It took awhile for my eyes to heal, but now they feel great.

Do you work in an office setting? My boss at the time was very understanding and let me choose where to work, based on the airflow. Building Services pulled floor plans and made suggestions based on air vents. driving to work, I used goggles. I wore glasses and found over the glasses goggle selection pretty big at Gander Mountain.

Feel fee to PM me with any questions or if you just need to talk with someone whose been there.

[brudni]

Hi,

I feel your frustration. It was several years ago but now I am doing well and no longer even think about my eyes or wearing goggles. Here is what has worked for me. First of all I went to a good opthamologist who was also a cornea specialist. She was the only one who could diagnose it after suffering and going to other opthamologists.

At first it was just using alrex, restasis and Lotemax just for flares where my eye turned red, usually I went to doctor as it has to be determined whether it is an infection or SLK? My Slk is allergy related no positive autoimmune tests. When the mold count was high my SLK got worse. Now I no longer worry at all and hardly ever have any problems thanks to the following.
Cauterized lower ducts, plugs fell out and did not work as well for me. Restasis only now., but for 4 years it was alrex and restasis twice daily. I also take prn omega fish oil. My doctor was amazed year and a half ago after changing my diet to the autoimmune protocol of Dr. Fuhrman. My eyes improved so much and my allergies have disappeared for myself and my husband. I would not have believed it. I used to take Clarinex everyday and started allergy shots at age five. I stopped the Clarinex a year and a half ago. I would have to go on oral prednisone when mold count was high.

The things that make my eyes worse are, dehydration. Hot packs or cold packs on eyes, sleeping with those night goggles and being in dusty rooms. Have to clean well. Hope this helps you. It was so scary at the time when it was so bad I could not leave the house without goggles and drops all the time.

I no longer have to wear goggles at all.

[Faith1989]

Brudni, thanks for sharing your story. What do you think helped the most? Do you think it was long term alrex/restasis? or the diet? or just the combo of both long term? Did the redness go away too? Congrats, i hope to tell your story one day

[PeachesW]

Burundi, thanks so much for your reply. And a big thanks to PAllen as well, we have a nice conservation going. I am so happy to have found this forum!!

I'll look into that diet. I did look at some dietary plans that help with inflammation which all recommend foods that are healthy which is a plus. Autoimmune and thyroid were both negative. Allergy testing for me showed cats, mold, dust and grass. Cats is the worst and I just adopted one so that might be the trigger. I just never felt by chest discomfort or runny, itchy nose from the cat. I was prescribed Veramyst nose spray and Singulair which I will start tomorrow.

I think once I can get the inflammation under control I might try restasis. I already asked my doctor about it and he highly recommends it. I just got the punctal plus on the bottom as well. Today has actually been an okay day and I get my goggles tomorrow which I'm excited about.

I am most excited I have been able to connect with others like you. If you google SLK the scariest things come up - no cure, can last for 10 years, very rare. To be able to speak to others that have gotten better is so, so amazing and uplifting. I am happy to hear you are feeling great brudni.

[brudni]

I think the restasis, cautery on lower ducts, and alrex and lotemax for flares worked well. I definitely still need restasis and the cautery. Because Dr. Fuhrmans autoimmune protocol brought down inflammation in all parts of my body and cured my severe allergic reactions it made the SLK less severe. I am a lucky survivor of severe of Stevens Johnson's syndrome 26 yrs ago and will always have dry eye. The prnomega.com fish oil helps but I still need the restasis as I tried without and had a flare and had to use Lotemax for a day. I cannot say enough about how great Fuhrmans diet is as my husband and I both got rid if asthma, allergies, sinus problems high cholesterol and have been able to maintain our weight loss for 2 years and we feel do much better. It has been a miracle. We lost so much weight too that people don't recognize us. It has helped my friend with RA also.

[brudni]

My eyes are no longer red and my vision has actually improved also. This past year I used Lotemax only once and it corresponded to the highest mold count of the year from the NAAAI.ORG in the Chicago. Peaches, I have no doubt your SLK is probably related to your cat. I am highly allergic to those also. I no longer get a runny nose or asthma like I did as a kid, but my allergic response comes now in the form of SLK. I hate to say it but it would be really hard on my eyes to have a cat. The eye doctor got mad at me when I went on Lotemax before coming in one time but I looked at the mold count and I knew. Even my allergist had trouble making the connection and every year he would have me get ANA tests. The diet does not work right away and my husband and I adhere to it which requires cooking and took quite a while to change my way of eating and my taste buds.

[Faith1989]

This is amazing. I am so happy for you. I suspect I may have an allergic component to mine as well. I am already doing everything you are minus the diet. I am going to do some research and give it a go. I have nothing to lose. I know you mentioned it took some time, just so I am not discouraged how much time did you need for the diet to be noticeable in the eyes? Again, I would do anything to make myself even SEMI NORMAL again. I know my eyes will never be perfect, but an improvement would make me happy!

Again, thanks for sharing your story on here and congrats!

[PeachesW]

Brudni-
I am looking at Dr. Furham's website now and see he has a lot of books. Are there 1 or 2 you recommend to jump start into the diet?

[brudni]

My husband and I started Dr. Fuhrmans Nutritarian way of eating Sept. 1 2011. When I went to the opthamologist in june 2012 she wanted to know what I was doing as there was such a dramatic change in my eyes. I got off of Clarinex by April 2011 but as soon as I start eating it he standard American diet or let the dust build up in my old house my allergies and eye problems return. My husband no longer takes Allegra, singulair or Lipitor. We both were professional dieters also and have no problem maintaining our weight loss of 85 lbs for him and close to 50 for me for 2 years. If only I had known about this when I was younger.

[brudni]

I meant April 2012 off all allergy drugs.

[rppnj]

...My husband no longer takes Allegra, singulair or Lipitor.

Hi Brudni,

Has it been established that Lipitor contributes to Dry Eye? I've been on Lipitor for more than 16 years and I would be very interested in any information that you have regarding Lipitor's contribution to Dry Eyes.

Regards, rppnj

[Tears of Joy]

Question.... what makes it worse?

Hi,

Thanks for your posts! They are helpful. I was diagnosed with SLK in 2007, theoretically. I don't think my doc remembers. I somehow got back to normal for a number of years after plugs all around, restatis, goggles etc.. But, it's been back for over a year. UGH! Cauterization in one, plugs in the other ducts. Lotromax plus serum eye drops, goggles, heat and cold packs. Part of my days are pretty comfortable. Afternoons and evenings are often tough!

I was wondering about your post, where you identified things that make your eyes worse. Did the hot and cold packs, plus goggles really make your eyes worse? I can understand the dust, mold, and allergies. I use the hot and cold packs plus goggles and still struggle. I too have allergies to dust, mold, mildew, grass, dander, etc. You also said that dehydration makes your eyes worse. Can you expand on that at all? Because of a medical condition, in which my body does not absorb fluids on its own (thanks to pituitary surgery). With the synthetic hormone I take, it's either absorb all fluids or lose fluids. I have to go into some dehydration on nearly a daily basis in order to prevent water intoxication. Yet, my docs can't seem to get the idea that this would affect my severe dry eyes!

I feel your frustration. It was several years ago but now I am doing well and no longer even think about my eyes or wearing goggles. Here is what has worked for me. First of all I went to a good opthamologist who was also a cornea specialist. She was the only one who could diagnose it after suffering and going to other opthamologists.


The things that make my eyes worse are, dehydration. Hot packs or cold packs on eyes, sleeping with those night goggles and being in dusty rooms. Have to clean well. Hope this helps you. It was so scary at the time when it was so bad I could not leave the house without goggles and drops all the time.

I no longer have to wear goggles at all.

[kymbo71]

I know this post is old but I also have SLK. I just had conjunctiva resection in January and can share if you are interested.