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Finding the right cocktail? Scleritis

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shauna65365
shauna65365

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

24 Replies

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  • Pettifog
    Pettifog shauna65365

    Posted

    Hi, Shauna --

    Pay attention to the out of breath part.  After nine months of taking Methotrexate, I wound up in the hospital for a week with pneumonitis, a rare side effect.  The most pronounced symptom was feeling out of breath, and it turned out my oxygen level was at 81%!  

    In 2014, at age 53, I was finally diagnosed with idiopathic scleritis, after years of dealing with it -- no underlying autoimmune disorder that anyone can find.  It is now considered recalcitrant or refractory scleritis since, so far, it has not responded to any of many medications.  Started on naproxen, then Methotrexate first by mouth and then by injection, then Methotrexate and Remicade, then off both of those when I wound up in the hospital with the pneumonitis in 2015 .  In 2016, started CellCept, then added Humira a year later.  So far, nothing has helped -- at all.  As of last week, I am off CellCept and Humira, and my doctor is now putting me on Rituxan -- just waiting for insurance approval.  Each treatment costs about $10,000 -- if no insurance, then no Rituxan, so my fingers are crossed really hard.  My doctor is the head of the uveitis department at Mass. Eye & Ear, so I feel like I'm in the right hands.  Just have to find the right drug!!

    • shauna65365
      shauna65365 Pettifog

      Posted

      Hi Pettifog,

      Thank you so much for responding to me. Also for sharing. I am literally printing out what you sent me and taking it to my doctors appointment tomorrow. I really think I have the same scaritis as you. I have tested negative to every test and they tested me for everything. After my inital exam the rhematologist didnt think I had an underlying auto amune desease. But when I didnt respnd to the high dose steroids she changed her mind. I have been sceptical ever since. Regaurdless I need to find something to get me into remission. But after reading everything on here it souds like no one at this point has hit this mark? Please keep me posted about weather or not your insurance will cover your drug. I am sending you positive vibes and thoughts.

      Smiles

      Shauna

    • Pettifog
      Pettifog shauna65365

      Posted

      Thanks, Shauna!  And the same positive energy back to you!  Please keep me posted -- I'd be interested to know what your doctor has to say tomorrow.  Good luck!

      Pettifog

    • shauna65365
      shauna65365 Pettifog

      Posted

      Hi Pettifog,

      So my eye doctor has reffered me to see a specialist over at the Stanford Eye clinic as I live in California. She doesnt want me to add another drug to my regiment until I see them. Like I said currently on Steroids (Just reduced to 15ml, Eye drops 3x day, and Methotrexate 8 pills 1x a week. I am almost pain free but and the redness is half better but its just not going away. My doctor said that there is an underlying thing causing it and she is hoping the specialist may have some more insight. I am not really sure how to feel about it. I got an echo test on my heart for my shortness of breath. I will get results tomorrow.

    • shauna65365
      shauna65365 Pettifog

      Posted

      On a completly different note. I shared what you wrote me with my mom because she has been so worried. My mom has MS and her drugs cost 1000 bucks per week. When she was waiting for insurance stuff she was told to actually call the actual drug company to tell them about the insurance issue. After 3 different calls and messages she finally got some one to call her back and they sent her the drug for free for a whole month until they got her insurance to cover it. So I know its a pain to have to call but if they dont approve it that may also be an option for you?
    • Pettifog
      Pettifog shauna65365

      Posted

      I'm glad to hear you're going to see a specialist.  You may well have an underlying condition causing the scleritis, but a large percentage of cases are idiopathic, meaning there is no apparent cause, which is incredibly frustrating.  Again, keep me posted.  I think we should follow each other's treatment and progress!  :-)

      P.

    • shauna65365
      shauna65365 Pettifog

      Posted

      So my doctor explained to me yesturday that Idiopathic is a medical term/way of saying they dont know what the underlying cause is. But there is a reason we have it. They just dont know why. So we are mysteries!! I would love to follow your progress and share mine. Since we seem to have so much medically in common.
    • Pettifog
      Pettifog shauna65365

      Posted

      Thank you for the info regarding insurance coverage!  I will keep it in mind.  I think the issue in my case is that Rituxan has not yet been approved for use in treating scleritis.   It is typically used for non-Hodkins lymphoma, and has only relatively recently been found to be an effective treatment for scleritis.  The same was true of Humira until just last summer, when it was finally approved to treat scleritis.  My doctor said that if Blue Cross declines it, he will fight for me, tooth and nail!  :-)
    • Pettifog
      Pettifog shauna65365

      Posted

      Yes, I think that's a very good explanation of what idiopathic means!  It means they just haven't figured it out yet -- it might just be that we don't have the means to test for everything yet.  I have a long history of medical mysteries -- my family and friends tell me I should have been on the show "House M.D."!!!

    • shauna65365
      shauna65365 Pettifog

      Posted

      Ok thats really good!! Its just so infuriating when you need something and money/insurance is the thing getting between you and your health!!
  • abbie_20562
    abbie_20562 shauna65365

    Posted

    Per my old posting - back in Jan 2011 I suffered a Rheumatoid autoimmune reaction which resulted in Scleritis in my left eye - I have never know pain like it.  I was treated at the Brighton Eye Hospital in the UK and even went for a consult with Carlos Pavesio at Moorfields, London.  I had been treated with high dose steroids, cyclophosphamide, anti immune drugs and enough pain killers to floor an elephant with no improvement.  In April 2011 the consultants decided that they had tried most drug theraphies so would try something more experimental - Retuximab - all the potential side effects were given to me (some of which were very scary) but I decided to go ahead as I could not keep going as I was.  Two infusions and a month later I was free of pain and being taken off most of the other medication.  By the end of 2011 I was free of all medications including steroids.  I was off work for over 8 months and was warned that scleritis was likely to reoccur.  However 6 years on I have never had another incident and am still pain free.  The only left over is a slight blurring in my left eye, the beginnings of a cataract from the steroid drops according to my consultant but I can live with thisbiggrin
    • Pettifog
      Pettifog abbie_20562

      Posted

      That is very happy news for me, Abbie!  I hope to be starting Rituximab (Rituxan) soon and my doctor and I are very hopeful.

      May you remain scleritis-free forever!

    • shauna65365
      shauna65365 abbie_20562

      Posted

      Wow Abbie,

      That is so scary but also so encouraging they found the right drug that helped you. Thank you so very much for sharing this. I am on steroids and Methotrexate. Almost pain free and the redness is half better but still not quite there. Good to know there are other options. Its been almost 4 months of feeling bad and I was honestly getting really depressed. But after reading these posts I feel a lot better. Even though It will take time it sounds like eventually I may get there.

  • theresa07885
    theresa07885 shauna65365

    Posted

    sorry to hear the high cost and of course the continued eye problems. i thought that by taking astaxanthin eye vitamins it could keep it at bay. i was proven wrong 2 wks ago. i still had some pred eye drops leftover, so i continued taking the daily vitamin along with the eye drops and the red eye went away in less than 1 week. am scheduled to see a rheumatologist in june. i have daily constant swelling at base of fingers on the back of my hands and hopefully the rheuma dr can give me a steroid injection. those shots are the only things that seems to work for my arthritis and soreness in my joints. now my rt thumb has been affected, maybe a ligament tear. i have always re arranged furniture all my life, am 62 and trying to stop. i have moved 30+ times over my lifetime, renovated and fixed up the 4 houses we owned, raised 6 children, and have spent the last 4 yrs as a custodian and plan on quitting in 4 more years if my body will only hold out. have had steroid shots in feet, shoulder, big toe, and ankle, several times over. most every joint on rt side has had one. mild cataracts but eye dr doesnt think thats it. all rheumatoid factor blood tests, sjogrens tests, and 4 others came back normal or negative. I guess Im just very special too!

    • shauna65365
      shauna65365 theresa07885

      Posted

      Yes, isnt it lovely to be so special!! My Rheumatologist explained that she didnt feel I was a mystery that I have auto amune desease of the eye that causes Sclaritits. Im so sorry you are suffering so much. I just wish they had better medication for us to take. The ones we do have to take are so brutal and dont garuntee remission. Its very frusterating.
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