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Does anyone suffer with uveitus (sarcoid of the eye)? I get steroid injections in my eyes.

Posted , 8 users are following.

lynn52039
lynn52039

I have uveitis brought on by the sarcoid. That was my first symptom that lead to the discovery of my sarcoid. I have it in both eyes. I've gotten the injections now every 3 mos for the last 4 yrs. My doc says He will have to send me to a doctor in OKC because my eyes aren't getting any better. Anyone else have the problem with thir eyes? I live in Ks and have found no one, specially doctors here who are versed on sarcoid. Am that I know I've researched on my own. I've had it since 1998 and it just flated up out of nowhere after being cakm for 14 yrs.

0 likes, 12 replies

12 Replies

  • Granny1957
    Granny1957 lynn52039

    Posted

    This is granny than give you a injection in the eye than don't give you pills my eyes get really dry
    • lynn52039
      lynn52039 Granny1957

      Posted

      No, I was on the pills for about 6 mos when I was first diagnosed. Have not taken pills since 1999. I was using prednisone eye drops but those weren't effective. Have you tried eye drops for your dry eyes?
  • polly79837
    polly79837 lynn52039

    Posted

    Hi Lynn,

    I have it in my lungs only. I have noticed a change in my eyesight but I also have diabetes. I'm waiting on an appointment to check for diabetic retinopathy but I am going to get my sight checked too. I'm sorry I can't be of more help but if I come across any info I will pass it on to you.

    Regards,

    Polly

  • winterr777
    winterr777 lynn52039

    Posted

    I do in my eyes but I haven't started treatments I just found out a few weeks ago. Idk if it's from shock or fear but I'm to scared to even see the specialist. But the optical dr told me I would more than likely have to receive shots in my eyes if not I will definitely go blind.
    • polly79837
      polly79837 winterr777

      Posted

      Hi Winter,

      Sorry to hear about your eyes. I can't imagine how you are feeling. Maybe it's both shock and fear you're experiencing at the moment. But is it not better to see the specialist who can treat your eyes and help your vision rather than being told there is nothing we can do. I imagine I would be very fearful but I would prefer to have my vision in the long run. I wear glasses for distance and I can't go anywhere without them.

      For your own sake go she the specialist. If it makes you feel better you don't have any nerve endings in your eyes so you don't feel anything. They may even suggest drops to begin with.

      Best of Luck,

      Polly

  • Brat84
    Brat84 lynn52039

    Posted

    Hi! Very sorry your suffering from uveitis. I too have suffered with it for many years. I was prescribed many eye dropsand given injections in both eyes. None of it seemed to help. Just recently I found a doctor who diagnosed me with sarcoidosis and put me on methotrexate and prednisone pills. These pills have worked wonders for me. I've gone from legally blind to nearly perfect vision in six months. I really hope this helps! Good luck!

  • tangles
    tangles lynn52039

    Posted

    Hi LynnEyes - sarcoidosis can cause a type of inflammation within your eyes called uveitis. In this condition the eyes become red and painful. It can also affect vision. (See separate leaflet called Uveitis (Iritis).) You should see a doctor straightaway if you have sarcoidosis and notice any eye symptoms. Your doctor may suggest an examination of your eyes when you are first diagnosed with sarcoidosis to look for any eye problems"

    Regards

    Tangles

    Following is interesting extract that I have found

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  • Ruby54321
    Ruby54321 lynn52039

    Posted

    Hello Lynn,

       I suffer from Pan-Uveitis, which I believe is all three layers of the eyes that are affected. So yes, I do have Uveitis! It is horrible......and worrisome. However, I have been on prednisone pill for years, recently started methotrexate injections and take steriod eye drops. Honestly, no body has answers. Sometimes it is calm...sometimes my eyes flare up...get red, painful...blurry and have floaters.

       Sometimes its very bad, at other times it is okay. I have had cortisonde injections once before in one eye...but I try to avoid it as much as possible. Have you noticed your eyes being more droopy afterwards?

      My doctor and I are just experimenting with diff drugs....as crazy as that sounds.

    I am fearful everyday but try to stay positive and hopeful.

    Keep me updated....let me know if you have any more information or advice.

    Apparently...eating healthy and excercising should help...I have been struggling in that department....!

    P.s....my name is Ruby 

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • zss
    zss lynn52039

    Posted

    Hello Lynn, your uveitis and subsequent sarcoid dianosis has a grim familiarity. First diagnosed with sarcoid in 2008, it was discovered whilst I was being treated for my chronic asthma. At that stage I was told by my lung specialist it couldn't be treated because it was too small to treat. Use of prednisolone was too harsh and could cause more problems.

    Fast forward to Christmas Day 2013, all day I was feeling ill and very tired (and no, I don't drink alcohol :P). Excruciating pain in my right eye. The next day I went for an emergency appointment at an eye clinic, was also told to have a chest X-ray straight away. The sarcoid had spread throughout my lungs.

    Up to that point, over the previous 5 years 2008 to 2013, I had constant infections in my sinus and chest. I caused me to have to stop my university studies.

    All the pieces then fell into place to explain my dysfunctional immune system. I don't have any defence against infections. No matter what it is, anything that starts in my upper respiratory tract, inevitabley ends up as a chest infection.

    My 35 year chronic asthma doesn't help either.

    Right now, my right eye is red and very sore. I'm going to an optometrist today to find out what it is. I hope it isn't a return of uveitis.

    Take Care

     

  • Ruby54321
    Ruby54321 lynn52039

    Posted

    Hello Lynn,

       I suffer from Pan-Uveitis, which I believe is all three layers of the eyes that are affected. So yes, I do have Uveitis! It is horrible......and worrisome. However, I have been on prednisone pill for years, recently started methotrexate injections and take steriod eye drops. Honestly, no body has answers. Sometimes it is calm...sometimes my eyes flare up...get red, painful...blurry and have floaters.

       Sometimes its very bad, at other times it is okay. I have had cortisonde injections once before in one eye...but I try to avoid it as much as possible. Have you noticed your eyes being more droopy afterwards?

      My doctor and I are just experimenting with diff drugs....as crazy as that sounds.

    I am fearful everyday but try to stay positive and hopeful.

    Apparently...eating healthy and excercising should help...I have been struggling in that department....!

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