Does anyone have any ideas about eye pain?

i am on Benapali plus 15mg prednisolone. Could I still get GCA even if my markers are low? I have been having pains in my eyes and it was my glaucoma so an extra drop was added. During the following week I have been woken with an ache in my eye. I had my pressures checked again on Friday and eyes looked at and all was fine. I have again been woken with a pain in my right eye and this time I realised it hurts if I touch my forehead slightly to the right of my right eye brow. I was of course asked by each Dr I saw if I had head aches or pain in my temples but I hadn't realised it came from there as only happens when I am asleep. I do have polymyalgia but that has been quite unnoticable for a while as the RA has taken over. I would have thought I wouldn't get it on what I am taking or am I wrong?

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  • Hi Baileybiscuit,

    Unfortunately 15mg is not a high enough dose to stop you getting GCA , neither are low blood markers, many people never have raised figures.

    Having said that, a pain in your eye does not mean that you have GCA, as you say you have glaucoma, but I think it would be wise to return to the doctors explaining that you are getting pains in your temples and take things from there. Better safe than sorry.

  • No, I think 15mg might be a bit borderline for managing GCA - although it is probably enough to reduce any pain you have considerably. They use a high dose to reduce the risk of it affecting your sight if it is obviously affecting the blood supply to the optic nerve but most rheumatologists feel a lower dose would manage it adequately.

    I suppose it is too much to ask - but would your rheumatologist consider trying you on tocilizumab/Actemra for your RA? It is looking very useful for GCA. It would kill 2 birds with one stone so to speak.

    Either way - there's a task for tomorrow morning! Call the doctor and tell them yes, you have got sore temples!

  • Well I have spent most of the day at A and E. All of my blood results were normal and my eyes were said to be very healthy with no sign of GCA. The blurriness I was told has to be constant and the fact that my temple on the right side hurt to lay on it and was not hurting at that moment means it couldn't possibly be GCA. I only wish I felt reassured. Have you known of people who have symptoms of blurriness come and go? or pain from the side of the head which also comes and goes? I told the Dr my own gp says I am not A typical for anything and he just laughed.Thank you for your reply.

  • Strange - some of the articles for symptoms to watch for suggest "blurring or double vision, particularly after waking in the morning or after a nap" - that hardly suggest permanent does it? And the scalp pain they mention includes the suggestion it hurts to lie on. However - you have to find someone who has come across that I suppose. At least the 111 doctor thought it was worth investigation. Hope it improves though. Why did we all have to get illnesses there are no definitive markers for?

    No, Benpali is like etanercept but is what is called a biosimilar. It hasn't been trialled in GCA, tocilizumab has and seems to work.

  • My blurring isn't there first thing in the morning and I have realised it seems to be when I am looking at close things. I had new glasses in September so they can't be to blame and first thing I can see without blurring.

  • I found that at times when working on the computer - looking into the distance every so often helps a lot. I've also had in the past to move the specs up and down my nose for best acuity - it's a lot cheaper than changing prescription! I know others who have had a similar effect.

  • It seems dry eyes are my problem and the drops I was using were no good. I didn't know that could cause so much pain especially as I was using drops already.

  • Do people use Benapali for GCA aswell? as it is not just steroids I am on. I will ask about that other drug when I next see someone. I have spent the day at A and E after being told by a 111 Dr to go there. All results and eye tests were good so I am confused as they didn't know what it can be. Thank you for your reply.

  • No - Benepali is not licensed for use in GCA and to my knowledge has never been tried. The only biologic used in both RA and (possibly) in GCA is tocilizumab and even that is not yet widespread. It has had its Phase 3 trials which looked good and is now in the approval process. There are a few doctors who have used it outside the trials but that will have been off-label or they changed the diagnosis to inflammatory arthritis.

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