Finding the right cocktail? Scleritis
Posted , 8 users are following.
Ok not the drink!! I am 25years old F. Just diagnosed with Sclaritis caused my underlying auto amune deaseas. They have no idea what one. So that is lovely. I have finally found an eye drop that helps after trying every one out there practically. Its calle Lotemax. Good luck getting your insurance to cover it mine wont but its worth the 200$ trust me! I am also on Prednesone but slowly tapering been on high does of that for 2 months. The side effects are just horrible. Started Methotrexate a month and a half ago but had to up the dosage as my eyes have hit a spot where they are not getting worse, But not getting better. Since the goal is remission My Dr. said I may need to take Humera with the Methotrexate. So fingers crossed this puts me into remmision. THe only problem is i feel ike sh*t a lot of the time. Super low energy, Out of breath. But my hope is once in remisson I can take a lower dose of stuff. Is anyone esle on a cocktail of drugs that have put them into remission? Also fun not so funny fact. Our eye dease is so rare only 10 thousand people in the world are diagnosed with it a year. Guess we are just that special!!!
1 like, 24 replies
joy31552 shauna65365
Posted
Please tell me how you are feeling as it has been 6 months since this post.
shauna65365 joy31552
Posted
Hi Joy,
?I have still not gone into Remission but I am figuring out how to deal with having a chronic illness. I have had my mourning/grieving process and even though I feel sad some days I am ready to try and live my life to the fullest. I have a lot to be grateful for and I try to focus more of my attention on that. Once I noticed my mind set change around how I feel about my chronic illness I have noticed a black cloud slowly lift. I also started taking anti depressants that I thought I really didn't need but now that I have been taking them for about 6 months now I realize it was extremely helpful. It just numbs the pain of what we have to deal with. It doesn't change it but it dulls it. Otherwise I am still working full time managing my 3 kids. Trying to loose the weight from the steroids I have hit 26 pound loss now still have 22 to go. I am just taking every day one day at a time. I postponed my wedding because of it and I think I am going to think about getting that back on track so I have something to look forward to. There is not a day where this doesn't effect my life but I am hoping in another year I have some days where I don't think about it. I think that is my next goal.
?How are you doing?
?
joy31552 shauna65365
Posted
Oh what a beautiful response , bless 🤗 just like you I feel most days can be battle. Over the next couple of days I will get back to with my story , take much care
kay57684 shauna65365
Posted
sankary_09990 shauna65365
Posted
Hi shauna
Thanks for sharing your story, I'm a 18 year old boy and think I have the same problem but I don't know which one exactly I have episcleritis or scleritis. I have a small swelling spot on the white part of the my eye on my right eye and half of my eye is very red sometimes and I'm very scared my eye is going to spoil I always feel depressed about it. I have been to a doctor and the disease is unknown to him he gave me one eye drop but it is not helping I stop using it. In 16 February 2018 I'm to see another doctor. If anybody can help please help me and reply
shauna65365 sankary_09990
Posted
I know how scary this all feels. Try to stay positive and I know just saying that feels very condescending. But I have found that stress triggers your eye to get worse. February 16th is not far away. But I know it feels like a lifetime. Is there any way for you to call or have a parent call for you to get an earlier appointment. You will need to see 2 doctors. You will need to see a Ophthalmologist and a Rheumatologist. Seeing these two doctors will be key to your recovery/maintenance of your eye disease. Even though there is no cure there is treatment to make living with this manageable. I have good and bad days but more good than bad now. I have now been diagnosed for a bit over a year. Be prepared for this next year to be quite a journey for you. Depression is a very high side effect of a chronic illness. Try to make an appointment to see your primary care doctor about possibly getting on anti depressants until you figure all of this out. Because feeling depressed is going to make your life so much harder. I honestly know this is scary and depressing and angering. But you will be ok. You are young and otherwise healthy. You will be ok!! You can message me anytime. I know what you are going through and I am a mom and my heart goes out to you. If there is anything I can do to help support you through this please let me know.
Smiles
Shauna
sankary_09990 shauna65365
Posted
Thanks for replying me shauna!
I don't have a family who can help me , I'm helping my self alone. The disease make my one part of my eye red but my eye don't pain me some sometimes I don't feel comfortable and sometimes my friends thinks that I'm crying, when I'm sitting alone they ask me what are you cry and I tell them I'm not crying but they don't understand, it's not easy to leave with this disease, I was a happy guy but now my life changes. this time I hope I get a good eye drops that can help me from this stress. Sometimes I'm confused sometimes people say there's cure sometimes they said there is not. How about you did your eye drops helps you to reduce the redness
shauna65365 sankary_09990
Posted
Hi Sankary,
?First off I am so sorry you are trying to deal with all of this with out a support system. I know we are strangers but I really am here for you. I had to try over 10 eye drops till I found some that actually started helping.
?May I ask what country you live in? I want to do some research about what options you have.
?Because you do not have family or friends that seem to understand what you are going threw I think it would be extremely helpful for you to see a therapist until you get a manage on everything. Also Anti depressants.
?Unfortunately there is no cure for what we have. But there is remission/management. Like I said you will have good days and bad days. Right now you are having a bad Flair. You will need to figure out with your team of doctors what you need to start doing.
?If you would like you can private message me and I can give you my personal e mail address? This way I can send you more specific things you need to start saying and doing to advocate for yourself. You will need to do this. It is crucial you find doctors that you feel are supportive and taking you seriously. You should be getting eye checks every 2 weeks at this point. From and Ophthalmologist.
Questions?
?Do you have an Ophthalmologist?
?Do you have a Rheumatologist?
?Do you have a primary care doctor?
?If you don't please spend this next week setting up those doctor appointments for yourself.
?You will need all 3 and preferably ones that will communicate with each other. If not that is also ok just make sure you keep them updated.
Hang in there and I know you cant imagine but in a year from now things will be better for you. It is a long journey so buckle up. I am here to help you in any way I can. I really can understand what it is like. My eye does the exact same thing.
Smiles
?Shauna
sankary_29422 shauna65365
Posted
Hello shauna !
How are you doing?
I'm from guinea Bissau but I'm staying in Germany right now in a refugee camp. Before I don't know this sickness but now it worried me a lot. What's the name of the eye drops that help you .
I use gmail this my address
And Facebook
And thank you shauna
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