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Sarcoidosis in eyes

Posted , 4 users are following.

Missymaya
Missymaya

Hi I’ve been diagnosed with sarcoidosis in my skin and both lungs waiting to see specialist,

i have since summer really light sensitive eyes they get watery and hurt sometimes I can’t even bear to look at phone or tablet screen 

I had eye test last year when symptoms were there sight was fine but he thought I had conjunctivitis at the time but I didn’t think so as symptoms carried on I have appointment a eye enfirmary on 19th. So I’ll find out if it is sarcoidosis, I just wanted to ask if anyone else has sarcoidosis in their eyes and if they had similar symptoms to me? 

I would really like to hear from you please 

thank you

0 likes, 13 replies

13 Replies

  • camey03589
    camey03589 Missymaya

    Posted

    Yes, I do, they as well thought it conjunctivitis, I have granduloma’s in my eyelids that make it impossible to wear contacts and always feels like a stye is coming up in my eye. I am making an appointment with ophthalmologist. To see what can be done.
    • Missymaya
      Missymaya camey03589

      Posted

      Hi thank u for getting back to me, do you have same symptoms in your eyes like me ? 
  • camey03589
    camey03589 Missymaya

    Posted

    Yes, but typically when Typically when I’m having a flare up. I’m on prednisone therapy right now, so it’s better.
  • david03145
    david03145 Missymaya

    Posted

    Hi, there is an eye element to my symptoms of Neurosarcoid .

    Even while l have my eyes tested regularly and have 20/20 vision and only require minor corrections in wearing reading glasses in day to day conditions.

    I can still "feel" the tension in my eyesight at times even though this feeling is not measurable in the numerous tests l have had.

    Worse still l had an "event" where l had the room spinning at a tremendous rate and double vision vertically and laterally. (I could see 4 of everything)

    This had mostly cleared within 2 days, but l still see double at extreme gaze, predominantly looking right.

    The main issue you will find is having the eye people work in conjunction with a Neurosarcoid specialist, or as in my case, across a range of specialities. It seems to be that the Sarcoidosis and Neurosarcoid conditions involve so many different doctors in my case... chest (Lung Sarcoidosis) ,neurology (Balance Specailist/Inner ear specialist, Neurosarcoid specialist, Periphial Neuropathy specialist & Ostioarthritus specialist for spinal asessments) that really l have 5 different requirements of doctors...and their communication together has left a lot to be desired.

    Good luck in your search for answers

    Kind regards

    David

    • Missymaya
      Missymaya david03145

      Posted

      Hi thank you for your message and sharing with me your experience ‘s 

      im going to the eye enfirmary on Monday so i should maybe find out if my eyes are affected and waiting to go to chest clinic they gonna do tests to see my lung. Function? And check if anywhere else effected ,

      it is true though my gp doesn’t know much about sarcoidosis and didn’t help 

      so I’ve got to wait and see what’s next I guess

      thanks again 

      kind regards 

      Maya

  • jackie44696
    jackie44696 Missymaya

    Posted

    I get watery eyes and light sensitivity, I've had my eyes tested for sarcoidosis at the hospital and this was ruled  out. I think the watery, blurred eyes and light sensitivity is one the of symptoms , who knows. this is my second time having a flare up of sarcoid, mainly suffering with joint pain and shortness of breath.

  • camey03589
    camey03589 Missymaya

    Posted

    Please keep me posted,  God Bless you and all of us, with our lives and wellness, in Jesus name, Amen!
  • david03145
    david03145 Missymaya

    Posted

    Hello again folks. I have been very unwell and have not posted for a while. My point today is to warn you of the possible consequences of taking steroids long term in the form of Predniselone.

    I have developed a dependency and on doctors advice stopped taking the drug over a period of 10 weeks at 1mg per week. I nearly ended up with full renal failure and felt terrible all the time in this process.

    I have since, had to come back on to the steroid, at a higher daily dose to compensate. All of his weekend me so much l nearly died and am still catching bugs very easily.

    I have since been told, that stopping should have been at 1mg per MONTH, with blood tests @ 5mg to confirm my body was producing enough cortesteroid itself.

    So... another doctor has also told me again the steroid is the likely cause of nerve end damage in my feet (Periphial Nuropathy) and so l fear this medication has done irreparable damage after long term use.

    I post this to make others aware, not to say "don't take this medication"

    Good luck with your individual battles

    Kind regards

    David

    • camey03589
      camey03589 david03145

      Posted

      Thank you for the info! I recently found out that I thought I had been off the steroids form months but still had cushings really bad I’m starving myself and can’t lose a pound. I had the same issue of not producing enough cortisol on my own, so a dr. Put me on it 4 years ago it’s a compound with a steroid 22 mg a day I’ve been taking I did quick cold turkey but I’m keeping up with my blood work and I’ll taper off once I get my new blood work. I truly didn’t know it had a steroid in it!
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