Uveitis
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Uveitis

› Forums › General Melanoma Community › Uveitis

  • Post
    • June 4, 2017 at 12:31 pm
    Dhva
    Participant

    Hi – has anyone experienced recurrent acute anterior uvieitis bilaterally and headaches while being treated with ipilimumab? If so, was discontinuation of ipi reecommended? Thank you 

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  • Replies
      • June 4, 2017 at 1:03 pm
      MovingOn
      Participant

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864885/

      Case report on Ipi induced uveitis and treatment.

       

        • June 4, 2017 at 3:53 pm
        Dhva
        Participant

        Thank you 

      • June 4, 2017 at 1:06 pm
      Newmanbell
      Participant
      My husband has had 3 infusions of ipi of 10 mg, and only reaction is sore red eyes and bad headaches. He was told if it continues to call doctor and have a MRI done.
        • June 4, 2017 at 3:54 pm
        Dhva
        Participant

        You might want to consult with an ophthalmologist.

      • June 4, 2017 at 2:40 pm
      Rocco
      Participant

      I experience severe eye-related side effects from 10MG/Kg Ipi treatments.  I received 4 total and then stopped and was put on high dose steroids.  My symptoms were red, blurring, itching eyes and severe headaches localized to just above my eye brows.  Originally they thought Uveitis, but a brain MRI with specific orbital slices added (extra pics of the eyes) showed swelling of the muscles behind the eyes caused not by Uveitis but Graves Disease (thyroid related) eye issues.  I would urge anyone experiencing eye related issues to get to an Ophthamologist for a correct diagnosis (Uveitis or Graves), have your eye pressures monitored, etc. AND have their Oncologist order the MRI AND add a thyroid panel to your blood work that includes the specific test for Graves antibodies. 

      Despite all the issues and hassels of trying to figure out what was wrong (this was late 2008 and Ipi was still in trial) and how to treat it and the time it took finally taper off steroids, Ipi worked for me.

      Hang in there!

      Rocco – Stage IV in 2005, Ipi responder, NED since 2009.

        • June 4, 2017 at 4:00 pm
        Dhva
        Participant

        Thank you. Have recently noted sudden hair loss (29 years of age), hand tremors, fatigue, headaches and excess sweating in addition to the second go round with uveitis. Fourth  ipi dose was about 6 weeks ago. The ophthalmologist is trying to contact the oncologist, but no word from the oncologist. The ophthalmologist is concerned about vision impairment and is leaning towards halting ipi. Waiting to see what is going on.

        • June 5, 2017 at 8:11 am
        raun cesar
        Participant

        Have they done MRI for that yet?

        • June 5, 2017 at 12:47 pm
        Dhva
        Participant

        No, never mentioned this, never thought it could be related.

        • June 5, 2017 at 12:53 pm
        Dhva
        Participant

        The situation is complicated in that the oncologist has ever had a patient with opthalmogic side effects, and the ophthalmologist had never had a patient on ipi. The ophthalmologist is now trying to consult with the onc to determine how to move forward. In the meantime, I've had no direct contact or communication from the oncologist. Trying to get informed from people who have been through this and grateful for the advice.

        • June 5, 2017 at 5:58 pm
        marta010
        Participant

        My husband developed Uveitis when first on Zeiboraf and again while on ipi.  He has had several bouts, all treated with Durezol, a steroid eye drop.  Has not had any issues in a long time but is still on a single drop in each eye daily as a maintenance dose.

        • June 6, 2017 at 11:30 am
        Dhva
        Participant

        Thank you, hope he is doing well.

        • June 6, 2017 at 3:12 am
        Rocco
        Participant
        I was treated at Dana Farber and my Ophthalmology team was Mass Eye Research & Surgery Institution (MERSI.com). MERSI treated me and ended up treating a few other Dana Farber referrals of those who experienced IPI related eye issues in case your team wants to confer with them. Hope this helps
        • June 6, 2017 at 11:32 am
        Dhva
        Participant

        Thank you for the info and referral. 

        • June 6, 2017 at 3:17 am
        Rocco
        Participant
        I would strongly suggest a thyroid blood test as the symptoms you now note are textbook symptoms for hyperthyroidism which can cause eye issues as well. A PCP can order that if your Onc won’t.
        • June 6, 2017 at 11:33 am
        Dhva
        Participant

        Thanks, waiting to hear from onc.

      • June 5, 2017 at 9:38 pm
      Mat
      Participant

      I don't want to freak you out, but I thought I had uveitis while on pembro in 2015.  I had a headache behind my left eye and was losing (scope of) vision in that eye–most notably in daylight.  Turned out it was not uveitis, but rather a tumor in my optic nerve (which was only discovered via MRI).  I would push for an MRI and also look to get with a melanoma specialist.

        • June 6, 2017 at 11:34 am
        Dhva
        Participant

        So sorry that happened to you! Scary but good info.

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