Eye infections: Hi All, I hope you're all having a... - NRAS

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Eye infections

attatel profile image
10 Replies

Hi All,

I hope you're all having a decent day.

I've been getting recurrent eye infections since starting tocilizumab. The ophthalmologist seems to think that it's more generally related to the RA but I wonder if it's the meds. This one is the only thing I've had so far that's been relatively effective for me so I'm worrried that i might have to stop it ( I've also had tooth infections since starting it but as my teeth are in a bad way anyway, I don't think that's related).

Has anyone else suffered from eye problems?

Our house is awash with eye meds because my poor dog has got lens luxation, corneal ulcer, glaucoma and cataract and we're constantly at the vets at the moment!

Thanks in advance,

Terryx

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attatel profile image
attatel
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oldtimer profile image
oldtimer

You do need to be extra careful about hand washing when on immune suppressants. It is so easy to forget the need in a busy life to wash for the necessary time, rinse and dry hands. Especially if you have a poorly dog as well, you may be busier than usual. Remember to look after yourself as well!

attatel profile image
attatel in reply tooldtimer

Thank you, I will! That's good advice. I'm quite careful about hand hygiene - as well as washing my hands, I've got lots of hand sanitiser around too for when it's more difficult to move. I did ask the doctor if the dog's and my eye problems were related but he said no, just coincidence.

Thanks again! x

fred42 profile image
fred42

I am also on Tocilimuzab and having issues with my teeth and gums which are new since I started the infusions. I do occasionally get itchy eyes but nothing more.

I know that my neutrophils were down so I'm only getting a half dose of Tocy at the moment, hoping my body will adjust and all will be well.

How long have you been taking Tocy?

I do hope the dog is doing well.

attatel profile image
attatel in reply tofred42

I've only been on it for 3 months. It's actually been fairly effective which is fantastic but maybe these infections are the price of it working. I'm on weekly self-injections.

I'm sorry to hear you're having problems too. I hope that you can find a dosage that'll both be effective and also ease the problems - it's like looking for the flippin holy grail!

We saw the vet yesterday and the dog is a bit better, thanks. His eye pressure has reduced and the ulcers have almost healed. With any luck he won't have to have the eye out.

Back to the dentists next week and the cornea clinic in three weeks. Fingers crossed for all three if us - you, me and the dog!

embroy profile image
embroy

Please get an Appointment with a Specialist, as they usually know what they are talking about.

I had a red eye for about 3 or 4 days, went to the GP, he gave me ordinary drops and said come within 48 hours if the eye is still red. I couldn't get an appointment , so I went the next day, the Lady Dr sent me straight to Western Eye Hospital, where I waited for 12 hours( no Joke). The Dr's , didn't know what they were dealing with.

Then I went up North where my parents live, they found out in one sitting what was wrong with me. I was admitted into hospital, at that time I didn't know what was going on ( wasn't quite confident), so my sister would come with me, but later onwards. I got my confidence, and now I go to the Eye Specialist myself, and I know what to ask. I had a defective cornea, so I would advise everyone to go for a second opinion, which I have done now.

I was taking Enterencept injections at that time. That was about 6 years ago.

attatel profile image
attatel in reply toembroy

That's very good advice. I'm lucky enough to have a good eye unit fairly near to me. The ophthalmologist there has referred me to the cornea clinic so hopefully I'll get more of an idea what's going on. I've had several bouts of keratitis so I'm hoping there's some way I can avoid it happening over and over.

What was the treatment for your eyes? Is your eye problem healed now?

Thanks for your advice and for answering!

embroy profile image
embroy

I had kerstatis in my left eye, can't see anything from it,, buy my right eye is fine, can do everything with the right eye,

I have had two Cornea Grafts and Cateract, and also a tube put in the left eye, at least they have saved the eye. But the Dr's up North they can't do anything now, when I spoke to the Cornea Specialist last time I mentioned to him I wanted a second opinion, he said I can have a second opinion. If they have said no in one place, the other place will say no as well.

The Dr's say soft contact lenses cause Kerititis, I have been wearing them for about 20 years. I am going to have a hand made lens put in my left eye as is is white as for the Defective Cornea.

attatel profile image
attatel in reply toembroy

Oh you poor thing! Thank goodness they saved your eye. I'm going to the cornea clinic in two weeks so I really hope something can be done to stop these infections before my sight's affected. Thank you so much for sharing your experience - it's made me take this more seriously than I was.

Best wishes to you, embroy, and I hope you can get all the treatment you need. x

embroy profile image
embroy

I forgot to mention that the second cornea graft, had Glaucoma, ( eye pressure gets very high) so you will have to be very careful .

I would advise you to have that checked as well, as it runs in families.My Dad has mentioned that my Grandmother had it, at a very early.age, she was only 45 years of age, and in those days they didn't know what it was, I am talking about 1950's.

Thank you for your wishes, hope everything works out for you, All the best. Please let the group know how you get along.

attatel profile image
attatel in reply toembroy

Thanks! Eye pressure was normal last time but I'll make sure it's checked regularly. Thanks for all your help and advice, and I'll let you know how I get on! x

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