Benapali and eyes

I seem to be forever asking questions here. Some of you may know I have had problems with my eyes recently. I have been to A and E twice and once it was my glaucoma so I was given extra drops. The second time despite me thinking it was GCA I was told all was healthy in my eyes and the blood tests. I was also seen last Friday after phoning the glaucoma nurse and all was said to be ok. My eyes still continue to ache, mainly at night waking me up. Has anyone had this experience? I did my Benapali injection last night and I looked at the leaflet with it as I had a small bubble I couldn't get rid of (apart from the big one) In the leaflet it says more serious side effects are pain in the eyes. Now I don't know if it's the injections causing it and just when I think they were working.Has anyone had a problem with eyes on Benapali or Etanercept?

14 Replies

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  • All the medical people you have seen say your eyes are fine but did any of them mention that they were dry? I have very, very dry eyes and they can be incredibly painful in lots of different ways. I find if I don't use my drops I can end up feeling like someone has punched me in the face, my whole eye socket aches and I feel like my eyes are being sucked back into their sockets. It is very unpleasant.

    You might not feel as if they are dry because they can often water when they get dry.

    I use preservative free eye drops all throughout the day - not just morning noon and night. I keep them in every bag and in my coat pockets and put a couple of drops in whenever I get the chance. I like HycoSan Plus - they di others that are good too and I think they do one that comes on prescription. I also like Theolose Duo. They do a special one for night time too, it isn't too thick. If your eyes are really dry find a 'gunky' one for night time, I don't use that sort unless I absolutely have to though.

    On the other hand the problem might not be dry eyes. Is your vision blurred? Are your pupils small? Are you getting floaters?

    It might be worth finding yourself a good local optician, ask around, some are much more knowledgeable than others about eye conditions! Book an eye test and tell them what your problem is and hopefully they will be able to help.

  • I have Sjögren's Syndrome and get eye drops on prescription as my eyes are very dry. Take them every 2 hours. Works well.

    Worth checking, they use a bit of filter paper to see how wet your eyes are, and also put drops in to look at the cornea. Have you had this done?

  • My endo thinks I appear to be developing Sjorgen's syndrome even though I tested negative for it - he said 'interestingly, rather like her arthritis, she has no associated antibodies such as Ro and La'. My mouth is never dry though, my skin has got dryer over the years - not sure if dry skin counts. My tear break up time has been checked loads of times - it is really low, I've got a thing called a a pterygium in my left eye that I can feel - can see it in the mirror too and the start of one in my right eye that doesn't bother me much.

    You're right you have to put drops in every couple of hours. I think that's the secret if sorting dry eyes out. Trouble is I do that, then I get my eyes all sorted out and because they don't hurt, I gradually stop putting drops in and of course they get sore again. Totally my own fault.

  • I don't have a dry mouth, just dry eyes, but I do have to be very enthusiastic about dental hygiene so probably saliva composition altered in similar way to tears.

    But yes, I am very careful about the eye drops....have had Sjögren's for 50 years and want to keep my eyes as healthy as possible. Helps that I don't now pay for the drops!

  • It's easy to forget when things don't hurt. I must make an effort when I get my new drops.

  • It seems my problem is very dry eyes and the new drops do seem to be making a difference.

  • Hopefully I can try some better eye drops soon as glaucoma nurse asked Dr to prescribe them. Thanks for reply.

  • Did they check to see if your eyes are dry?

    Beware preservatives in eye drops!

  • Hi

    What has your rheumatologist said about this? Did the eye pain start after you started on Benepali, is there any pattern to the eye pain ie does it worsen following your injection but then improve as the week goes on? It might be helpful to keep a diary of how this is affecting you. Sadly it is sometimes quite difficult to determine whether a drug is causing the problem and stopping the medication may be the way to determine cause and effect, albeit that the effects of the medication do persist for a while after stopping. I am not suggesting that you do this without consulting your doctor of course but if the eye pain continues it may be one of the options?? Hope things start to improve for you soon.

    Best wishes

    Lorraine

  • I had a phone call from the specialist glaucoma nurse and she asked about my symptoms. When I told her she said she thought it was very dry eyes. I told her I used drops for that but she said they weren't the right ones and she would write to my gp. I got my new drops last night and I couldn't believe the difference they made straight away. This morning I have written in some Christmas cards, my eyes feel so much better. I am pleased that nurse rang as the three eye consultants I saw didn't pick the problem up. Thank you for your help. I see my biologic nurse tomorrow to see how I am doing so there wouldn't have been time to stop the Benapali before I see her.

  • Great news. Dry eyes are absolutely dreadful. When you tell people you have dry eyes they have no idea of just how painful they can be.

    Another thing that helps now that you have had a diagnosis of dry eyes and are on your way to recovery is to use a thing called an eye bag. You pop it in the microwave for a few seconds then lie down with it over your eyes, the heat really soothes your eyes.

    You can also squeeze a face cloth out under a hot tap - not too hot though - then hold it against your eyes, until it cools then repeat. I actually prefer doing that although I have an eye bag as well.

    What kind of eye drops Did the nurse prescribe - I'm always after recommendations for good eye drops.

    Don't forget to put them in every couple of hours, even or especially, when your eyes feel better (and that's definitely do as I say not do asI do 😉)

  • They are Hyabak drops. I just put some more in. I will try the heat thing. Would a wheatie do if not too hot?

  • They're great. Think that's the prescription version of the HycoSan Forte that I use.

    Just make sure that your doctor RPS prescribing it for you and doesn't try to get you into something cheaper. If they do get back onto your glaucoma nurse / consultant.

    Depends on what size your hottie is. The eyebag is not all that big, its shaped like an sleeping mask and is unperfumed.

  • It's long about 16inches, so maybe too big. Where would I find eyebags?

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