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Scleritis -EXCRUCIATING PAIN

Posted , 5 users are following.

jessica21112
jessica21112

I have been dealing with scleritis for 7 weeks now. Off an on on prednisone drops - prednisone back for 2 weeks.  back and forth till eye specialist. The Rheumatologist didn’t find a per say an autoimmune disorder. My antiinflamatory agents are high. So Tuesday i started Methorexdate. Today my right eye hurt so bad and was so red my eye specialist put me on Prednisone 20 mil twice a dat and Tynenol for pain. THIS IS HORRIBLE EXCRUCIATING PAIN.  I know there is no cure but what makes it better? How long before the meds work. This is week 6.  I’m in so much pain! This beyond freaking me out because it’s MY VISION!

1 like, 14 replies

14 Replies

  • shauna65365
    shauna65365 jessica21112

    Posted

    Hi Jessica,

    ?1st don't take Tylenol for pain. Take ADVIL!! It is an anti inflammatory and a pain helper. I was doing the same thing and my Rheumatologist told me this. Also I am so sorry. Just brace yourself for a ride. I hope you can get the pain under control and manageable. It takes a while. Also Methotrexate takes up to 6 weeks to actually start doing anything. Its a bummer but true. 

    ?I know its scary but hang in there. The more you stress the worse your flair up. I know I know easier said than done. Drink Orange juice Pineapple juice. Both of those things I have heard are good for anti inflammatory. Hey it cant hurt? 

    Smiles

    Shauna 

    • jessica21112
      jessica21112 shauna65365

      Posted

      Thank you! nobody other than some who has dealt with it knows the PAIN and how miserable this is. Oj it’s is! I’m going to Costco!
    • Pamela_Elle
      Pamela_Elle shauna65365

      Posted

      I prefer advil as well but depending on her other medications maybe tylenol is the only med she can take. I know that is the only pain reliever I can take and it is because of my other medications. :-(
  • carole30337
    carole30337 jessica21112

    Posted

    Jessica you are in for a long and bumpy ride so hang on tight. One of the problems is the difficulty to diagnose as we are rare & special creatures us sclertis suffers! Mine took 12 months before I had a diagnosis and now 3+ years later and 2+ years on the steroids, Prednisolone tabs, trying to get the dose down between knock backs. At least you know what you are dealing with and that one day, you will get some relief from the excruciating pain, be strong, keep in touch on here & we will all support you. Hope you are now getting some pain relief.

    • jessica21112
      jessica21112 carole30337

      Posted

      Today  is day 4 on prednisone 20 mil twice a day. Since Friday my eyes have gone from blood orange red to a resemblance of white.  Tomorrow i follow up with the eye specialist again. Abd it will my second dose of Methotrexate. Last time I’d made ma nauseous as heck.  We will see . I take it in the evening so at least I’m not dealing with nausea while at work.  I will day having a support system and talking to individuals that KNOW and have experience this does help.  THANKS!
    • shauna65365
      shauna65365 jessica21112

      Posted

      The Methotrexate tabs made me feel REALLY awful. I switched to the injections. I still get queasy but its not as severe. I am glad your eyes are starting to go back to some sort of normal. It really sucks when flairs are that severe. Hang in there!!

       

    • Pamela_Elle
      Pamela_Elle jessica21112

      Posted

      I take10 pills of methotrexate weekly but divide them in half making sure I took both half dose within a 24 hour period--it helps.
    • jessica21112
      jessica21112 Pamela_Elle

      Posted

      I took five last Tuesday and again 5 tonight. I also take folic acid every day. 
    • Pamela_Elle
      Pamela_Elle jessica21112

      Posted

      I take folic acid too. Ask the doctor if you can split the dose 3 and then 2 one in morning and one at  night and make sure you eat with it.
  • Pamela_Elle
    Pamela_Elle jessica21112

    Posted

    Oh goodness Jessica,

    How I remember these days, especially the pain. In addition to the eye specialists and RA doctor I have locally, I go to an eye specialist at Duke University. He allowed me to go up to 40 mg of oral prednisone and let me determine how much I needed to eliminate the pain. Once you get to the dosage of prednisone that eases the pain; your RA doctor will get you on a dosage of other things like methotrexate and humira or remicade...depending on your inflammation markers. Once they kick in, you can ease of the prednisone-make sure you don't go off oral prednisone without tapering or you will be in big trouble.  It took me a year to get off that stuff, I hate it but in case you have something called a flare you will need the prednisone again.

    I am  going on 2 years of navigating this stuff. I am still trying other things to help and both mentally and physically I am getting better.

    Wishing you all the best,

    pamela

    • jessica21112
      jessica21112 Pamela_Elle

      Posted

      I’m actually waiting to see the eye specialist now. Been on 40 mg of prednisone since Friday. Tonight  I have to take my second dose of Methotrexate and I’m not looking forward to it cause  Tuesday it made me sick! And they have to upped my high blood pressure dose! Ugh 😑 I hate this so much! 

    • Pamela_Elle
      Pamela_Elle jessica21112

      Posted

      Have you split the dose of the methotrexate? I have found that I have to eat when I take it--don't do that with any other pills and I take 10 pills. I take 5 one morning and 5 the next morning making sure that I get the total dose in within 24 hours. It allows me to tolerate the methotrexate. What my research specialist told me was try to tolerate the methotrexate because each time I change the drugs because I can't tolerate them, I am getting more adverse side affects. I take remicade infusions and methotrexate. I continue to have the scleritis but it is no worse. Of course the goal is to not have any signs of it because the fear is the sclera melting. I think why it takes so long is the potency of the pills I guess they are always erring on the side of caution. 

      My best to you. I know your pain. Something for you to think about is my experience with the pain that I felt was cutting my eye like a knife. Each doctor was telling me yes they know it is painful but I wanted to scream it from the highest mountain. Finally a research doctor asked if it was transient or constant. I said transient. He said that isn't the scleritis check with your primary care doctor. I did and I my nasal cavity was filled with mucas. I didn't even consider it but I  took mucinex d and no more pain. I now use saline and Flonase to keep the passages clear.

      I wish you all the best!!!!

  • CathyO
    CathyO jessica21112

    Posted

    I've found ice packs to be very helpful when the pain is unbearable. Hang in there. You are not alone!

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