Oral steroids like prednisone?

[03CobraDryEye]

I was wondering if anyone on here underwent treatment with oral steroids, like prednisone, for their dry eye condition? My severe dry eye condition was induced by a yet to be diagnosed eye inflammatory disease. The most improvement I saw with my eye inflammation was while being on prednisone for 7 weeks.

[ringo]

As I replied to you in your other thread, when I was at my worst, and I was so scared that I was crying hysterically with my doctor, he said that my condition will improve a lot surely on oral steroids/ and or immunosuppressants. Same goes for injected/ infused immunosuppressants. He told me, do not worry, if nothing helps, and things get real bad, we have that escape route, which will always work, as dry eye is an inflammatory corneal disease, and it is bound to subside when on oral/ intravenous steroids or immunosuppressants.

So, oral steroids/immunosuppressants will have a potent healing effect on dry eye.However, before you go on them you need to try hard topical medications (higher concentration cyclosporine, steroid drops, NSAID drops), and only if you find that nothing helps after some time, then and then only you are justified to risk the systemic side effects of oral immunosuppressants/steroids.

I have also found help with the supplement NAC.
I know that is easier said than done, but please try not to cry too much, as this aggravates dry eye. When I cry I wash my own tears with artificial tears, and after that put a drop of NSAID drops on each eye, to counteract the consequences of crying.
Hope that helps.

[03CobraDryEye]

What is the NAC supplement??? I too have noticed that when I cry my tears make my eyes sting a bit and I also use artificial tears after to 'clean out' the eyes. I know there are a lot of associated risks with oral steroids but I'm anxious to get back on them despite their side effects. The only thing I noticed while on them was having a raging appetite all the time. I know that at the Wilmer Eye Institute they've had tremendous success using lower doses of prednisone and an immunosuppresant drug called Cellcept. I'm willing to try anything at this point to increase my tear production which was completely normal prior to this illness.

[ringo]

Please check the post about the NAC supplement in the thread in "today's posts".

I also replied to you in your other thread regarding the use of oral immunosuppressants and steroids-- after you elaborated on the severity of your case, I completely agree that this is a good treatment option for you. Stay on them for a while longer, and put in tear duct plugs to keep the tears in the eye.

And again-- higher concentration of cyclosporine in the eye will do the two things you need-- it will resolve inflammation and stimulate more tears.You can use it together eith the oral medications, and then taper them off while you remain on it. That will guarantee you won't suffer from rebound symptoms after you stop the steroids.

[Brooke]

Does anyone know if improvements realized while taking oral steroid or immunosuppressant therapy remain after stopping the medication? Or is it something that must be used continuously to maintain improvement? I know steroids can place other chronic conditions (i.e. Crohn's) in remission and only be resumed if and when a flare up occurs.

[ringo]

As far as I was told, the oral medications are taken in pulse treatments, esp the immunosuppressants. They are never taken continuously. Doctor told me there have been cases of up to 2 years follow up of dry eye patients after a course with immunosuppressants who did not have a relapse of dry eye again.

Some though, did have a relapse, and needed a second pulse treatment. There are potentially very serious side effects of being on such drugs even as a pulse treatment. This is chemotherapy. It is prescribed for severe cases, where the erosions and scarring are totally debilitating, or sight-threatening.

Still other patients might choose to stay on a lower dose of oral steroids for longer time-- like a few months in a row. Tha is a safer option, and also renders excellent improvement.

However, I have not had the courage to go on these medications; not even when I was hospitalized with severe erosions adn was offered the treatment.

[spmcc]

infusions, immunosuppressants, oral therapies

My rheumatologist wrote in a report to me:

Oral immunosuppressive therapies such as oral cyclosporine, methotrexate, or TNF-inhibitors have not been shown to be effective for the symptoms of the sicca complex. Newer agents such as rituximab and epratuxumab are being investigated and show some encouraging results.

[03CobraDryEye]

I know some folks on this thread are concerned about the side effects of oral steroids but I can tell you it did wonders over 7 weeks to reduce horrible eye inflammation for me that left me so light sensitive that I couldn't tolerate indoor or outdoor light. While I still have inflammation left, I can only imagine how beneficial it would be to folks who are suffering from dry eye symptoms. I think its a worthy risk and as long as its administered properly I don't think people should fear it. I started with 60mg of prednisone for the first 5 days, then went down to 50mg for the next 5 days. Then I went to 40mg for the next 10 days and reduced it by 10mg every 10 days. While my eye issues aren't cured, it made a dramatic improvement and I hope my new doctors will put me back on it or another immunosuppresant drug like CellCept.

[ringo]

I read in your other post that you are responding well to Restasis (you are one of the lucky ones). That makes me think -- before you decide on going into serious oral immunosuppressive therapy (though I think you have already decided for it), you might try a higher concentration of topical cyclosporine with a topical mild steroid for some time and see how you feel.

However, given the horrible history of your case, I understand that you are completely justified to be willing to go for the oral therapy. I read about Cellcept yesterday, it is usually taken with oral cyclosporine and a steroid for best results.
Like I said before, after you elaborated on your condition, I realized that the severity of your case qualifies you for this type of treatment.

At some point when I was hospitalized with severe erosions, I was also eligible for oral immunosuppressive therapy, but I refused it--- but that's just me, I was so scared of everything at that moment, and was extremely suspicious of doctors, so I suffered may be unnecessarily, may be I could have spared myself by accepting the oral medications.

In your case though, you already have some experience with oral steroid therapy, and fortunately it did not cause any serious side effects, that others might experience. Also, your case is very severe, both in terms of symptoms and clinlical signs, and that qualifies you for therapy with oral immunosuppressants. I am sure that the doctors you are going to see at the Wilmer Institute will recommend that you continue with the oral medications.

Please keep us posted and let us know how you are doing.

I wish you the best of luck, successful treatment and fast improvement!

[nycdryeyegirl]

"What is the NAC supplement??? I too have noticed that when I cry my tears make my eyes sting a bit and I also use artificial tears after to 'clean out' the eyes. I know there are a lot of associated risks with oral steroids but I'm anxious to get back on them despite their side effects. The only thing I noticed while on them was having a raging appetite all the time. I know that at the Wilmer Eye Institute they've had tremendous success using lower doses of prednisone and an immunosuppresant drug called Cellcept. I'm willing to try anything at this point to increase my tear production which was completely normal prior to this illness."

Hi,

I hope the following story about my dry eye saga answers your question about the use of oral steroids and cellcept for a dry eye inflammatory condition!

I had a very severe acute inflammatory attack on my tears glands about eighteen months ago, caused by an underlying auto-immune disease (lupus). Unfortunately, seventy to eighty percent of my tears glands were damaged within a period of twelve to twenty-four hours at the time of this attack and only recently was I given the correct diagnosis.

According to an eye doctor I consulted with recently as well as my current doctor, the treatment for a severe acute inflammatory attack on the tear glands due to an underlying disease like lupus, would be systemic steroids with subsequent immunomodulatory and/or immunosuppressant treatment (cellcept in my case).

I would like to add that I was told to use this drug treatment approach (steroids and cellcept) by two highly regarded ocular immunologists.

I hope my story was of some help to you.

Pam

[03CobraDryEye]

"What is the NAC supplement??? I too have noticed that when I cry my tears make my eyes sting a bit and I also use artificial tears after to 'clean out' the eyes. I know there are a lot of associated risks with oral steroids but I'm anxious to get back on them despite their side effects. The only thing I noticed while on them was having a raging appetite all the time. I know that at the Wilmer Eye Institute they've had tremendous success using lower doses of prednisone and an immunosuppresant drug called Cellcept. I'm willing to try anything at this point to increase my tear production which was completely normal prior to this illness."

Hi,

I hope the following story about my dry eye saga answers your question about the use of oral steroids and cellcept for a dry eye inflammatory condition!

I had a very severe acute inflammatory attack on my tears glands about eighteen months ago, caused by an underlying auto-immune disease (lupus). Unfortunately, seventy to eighty percent of my tears glands were damaged within a period of twelve to twenty-four hours at the time of this attack and only recently was I given the correct diagnosis.

According to an eye doctor I consulted with recently as well as my current doctor, the treatment for a severe acute inflammatory attack on the tear glands due to an underlying disease like lupus, would be systemic steroids with subsequent immunomodulatory and/or immunosuppressant treatment (cellcept in my case).

I would like to add that I was told to use this drug treatment approach (steroids and cellcept) by two highly regarded ocular immunologists.

I hope my story was of some help to you.

Pam

Thanks for your story Pam. Have you started that treatment and seen any positive results? I've seen some articles involving drs at Wilmer where they use CellCept with lower doses of prednisone when they need to treat patients for 3-5 months for serious eye inflammatory diseases. It seems a lot of serious eye inflammatory diseases produce a moderate to sever drye eye condition for various reasons.

[Brooke]

Cobra,
You mentioned that your eyes improved while on oral steroids for 7 weeks. How long have you been off of the steroids, and have you maintained that improvement?

[Pinky]

Hi Pam,
I may have suffered a similar infammatory attack as a result of an autoimmune disorder. Just wondering how you knew that 70-80% of your tear glands were damaged? Is there a test for that?

Pinky

[03CobraDryEye]

Cobra,
You mentioned that your eyes improved while on oral steroids for 7 weeks. How long have you been off of the steroids, and have you maintained that improvement?

I started my prednisone treatment on Aug 14 and completed it on Oct 5. 2 weeks before starting the treatment my eyes suddenly and unexplainably went from being whitish and pinkish to just blood red. I've never seen anything like that. By mid September my eyes started having more white in them than they had in months. And after stopping the treatment the inflammation has not gone down at all, except over the past 2 days my right eye has looked less red and I'm crediting the Restasis for that. But my right eye is still extremely dry compared to my left. My NJ drs were unable to identify which eye inflammatory disease I had but I sure as heck have one hell of a severe dry eye case. I lobbied my NJ drs for more steroid treatment but they stated that it was too risky. As it stands, the Wilmer dr I saw on 11/30 suspects my eyes are red and still inflamed some due to eye dryness. But he also felt I should be re-examined by one of his colleagues which he feels is more experienced with conditions like mine. I'm going to get a more comprehensive biopsy done and blood work with Wilmer. I refuse to believe that my condition can't be cured or significantly improved somehow. I believe the Lord Jesus Christ has led me to them for a reason. I refuse to believe otherwise and I know there is hope for all of us that have dry eye problems. I just know with all my heart that there has to be.

[nycdryeyegirl]

Thanks for your story Pam. Have you started that treatment and seen any positive results? I've seen some articles involving drs at Wilmer where they use CellCept with lower doses of prednisone when they need to treat patients for 3-5 months for serious eye inflammatory diseases. It seems a lot of serious eye inflammatory diseases produce a moderate to sever drye eye condition for various reasons.

Hi,

I apologize for not responding to you sooner! For now, my doctor has decided to give me Durezol steroid eyedrops, (which is the same as Pred Forte but without the preservatives) and see if that works.

Hopefully at my next appointment with him, I'll see some positive results from these eyedrops.

Pam