Things I have tried--hoping for success!

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This forum is great! The ability to express your pain and for it to be understood and acknowledged helps me beyond measure. In my experience, this disease, is not only painfully debilitating, it is emotionally exhausting. The advice and experiences within bring hope where hope is often hard to find!

One year and two months ago, I went to get contacts. Within a month, my eyes were beet red and I was in the pain we all know too well. Six months later, my diagnoses was anterior and posterior scleritis. Like all of us, it has been a long journey. I finally found an eye specialist in my area who could properly diagnose me. He believes it is scleritis rooted in RA. What he then did was form a team. He found a retinal specialist for me at Duke University and made an appointment with a rheumatologist who could prescribe and monitor the endless drugs they try out on us Guinea pigs.

Of course, like all of us, I have been on varying amounts of prednisone since the onset of this journey. Yes, I too, am thankful for the pain relief but consider it a demon the longer you are on it: bone loss, mood swings, suicidal thoughts, cannot sleep, night sweats, and the list goes on.

January: I began taking 3200mg of Advil to try to alleviate the pain. It never alleviated all of it but I could function. I took and continue to take predlisone drops and comagan drops to relief the pressure built up from the predlisone drops

March: Under the supervision of a rheumatologist, I began 15 mg (6 pills) of methotrexate taken weekly and folic acid daily, while still trying to taper off prednisone.

May: Humira was added, first every other week, then weekly.

If you think the scleritis is bad, add all over head pain in addition to the pain behind your eye and on the bridge of your nose, swollen feet, and waking up every two hours to get a drink of water for dry mouth. I would hold my head at night and cry until I could cry no longer. I equate all those side effects to Humira.

Last month, I went to Duke University in Durham, NC for a follow up appointment. A doctor, who is an associate of my specialist examined my eyes and remarked about how dry they are. She asked me to get over the counter eye drops for dry eye, without preservative, and to put them in my eye every two hours.

At this point, I am willing to try almost anything.

So……………

1.       I do the dry eye drops but sometimes I forget. I found, on Amazon, a mask that heats up and is for dry eye. I do this morning and night for 30 minutes. I know it feels amazing and I think it is helping. I have been doing this for two weeks.

2.       I have been going to an Acupuncturist for about 2 months.

3.       2 weeks ago, I began oil pulling which is a process of swishing coconut oil in your mouths to rid any hidden bacteria or infection that may be present in my gums. Google ‘oil pulling.’ I hate doing it, but in the light of the alternative of scleritis, I will do it.

Here is where it gets good:

Last Friday, I decided my quality of life was of no quality and I did not give myself the Humira shot.

Saturday, I woke up and I was a new person. It was astonishing and very unexpected. I had no head pain and no swelling in my feet. By Sunday, I slept through the night without the exhaustion of dry mouth. I have reduced my prednisone to 2.5 every other day. By Monday, I felt no need to take the Advil first thing in the morning. For eight months, I have not been able to begin my day without a cocktail of prednisone and 800mg of Advil.

I asked my doctor if she would consider me going off the Humira until my next bloodwork tells the tale of my inflammation. She believes this is simply a fluke and that the Humira finally kicked in. She believes that if I stop taking the Humira, my scleirtis will get worse.

For now, I am going to wait and see how I feel. Neither of my choices are good if indeed she is correct. Go blind or live a life that is not worth living on Humira.

My advice to everyone is to think outside the box. You know your body better than anyone else. Think about any possible cause and try things. If I had to do it over again, I would try adding one thing at a time so I would know what indeed is working. However, like all of us, I was desperate for relief.

Please pray for me that this works!   

Update: I went to the acupuncturist yesterday. My regular person is on vacation so I was with the person who started the clinic. She told me that eye is a reflection of what is happening in the liver and the liver is where we store anger that is not released. I thought this very interesting. She gave me chinese herbal medicine to get "the fire" out of my eyes.

Good luck to all!

 

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  • Posted

    I have epischleritis so it's nothing like you describe. I've been tested for lots of auto immune diseases but all come back negative. I've been to Duke, but they misdiagnosed me with Occular Rosacea. My doctor (8th one) finally diagnosed it and says 50% of the time the cause is unknown. I'm sorry for your struggle. I will pray it gets better. 

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  • Posted

    I've been suffering from nodular episcleritis since the past 2 years. Ive used Lotemax for every episode and that took care of it. This time however nothing seems to be getting rid of the redness. I'm willing to try anything. Did the acupuncture session help you? I'm trying to see one here in Atlanta.

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