Eye vision problems

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Hi all

i am into my 2nd round of Nivolumab and have recently suffered from Uveitis. This came on very suddenly with pain and inflammation in one eye followed by blurred vision and a lot of discomfort. After intensive tests at the acute eye clinic the consultant believes this has been caused by my treatment. My oncologist says this is very rare and is postponing my next round of treatment. Has anyone else experienced this problem as I am nervous that further treatment could cause more loss of vision. I am being treated with steroid drops 6 times a day for the next 4 weeks to control the inflammation in the hope of my vision returning.

any advice please. Xx

  • Hi 

    I'm sorry to read that you're suffering from Uveitis as a side effect from Nivolumab.

    I noticed your post hadn't had any replies yet so I'm tagging  into my reply as they have posted on a couple of occasions about suffering from this condition too. Hopefully they'll pop on and tell you about their experience.

    x

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  • Hi Latchbrook

    Thanks for your reply and for tagging in somebody with a similar experience.

    x

  • Hello ! Yeah I am now have chronic uveitis after having on a number of occasions . I am on steroid tablets as oppose to the drops . I’m still on my target therapy as I was took off the nivolumab last year ( for different reason ) but I did have my dose lowered to try and combat it . I see a uveitis specialist at the eye hospital now . She’s always optimistic on options that don’t Interfere with treatment . I don’t suffer in pain anymore but my vision is poorer

  • Hello. Thanks for your reply. Did you continue your treatment when your uveitis flared up? Mine is postponed for a month whilst I am taking steroid drops 6 times a day to reduce the inflammation at the back of my eye. I am worried that when I restart the nivo that it could re occur or my other eye could be affected. I am quite shocked that I have lost some vision so quickly and don’t want it to get worse x

  • Hello . Yeah I did, but all treatments I’ve been on I’ve suffered from this. This is the longest I’ve stayed on a treatment alongside managing it . It’s been trial and error with the dose of steroids and my tablet dose . I’ve responded well to my meds so I guess they are reluctant to stop treatment. I guess depends on how bad your vision is ? I’ve been at the eye hospital today actually and they’ve put me on the steroid drops alongside steroid tablets . Are you seeing a uveitis specialist ? I found that’s helped as oppose to just a normal ophthalmologist ? 

  • Hi there. Sorry for my late reply and thanks for all the info. At the moment my treatment is still halted on the advice of my consultant ophthalmologist who I see again on August 31st when my course of steroid drops finish and my vision will be tested again. I do feel that my vision is better but I have also had more side effects from the therapy. I had  my CT scan last week so that will show if the treatment is working I suppose. Dealing with melanoma seems to be an uphill struggle at the moment but I will follow advice and see what is recommended.

    cheers

  • Hello - sorry for the delay I’ve been having issues posting . I see you’re seeing the doctor tomorrow - fingers crossed for you . I’ve seen a difference since the steroid tablets although it’s a bit up and down and trial an error with them . I hope your other side effects aren’t too bad . I had a terrible time last year but definitely feel like I’ve turned a corner . It is difficult at times though . I hope you get good news from your scan , come back and let us know !