Eye injection - Uveitis

[Sarahg62]

Good morning, I don’t usually ask questions, but here goes. Last week I got an emergency appointment at the opticians as the sight in my eye was all weird. Couldn’t read anything as the words all look smudged. It appears I have a Macular Edema. I now have an appointment at Moorfields on Wednesday for a steroid injection. Has anybody had one of these - what’s it like. I am dreading it, had so many needles stuck in me over the years, but in the eye it is petrifying me. I am already on eye drops for Anterior Uveitis, but apparently this is caused by Posterior Uveitis.

[Caza]

I have no words of wisdom. Just wanted say I can understand your anxiety. But Moorfields is the most fantastic hospital & I’m sure that they will put you at ease & make it as painless as possible. Good luck.

[Sarahg62 in reply to Caza]

I’ve been going to Moorfields for about 5 years now, and agree they are absolutely brilliant. The only annoying thing is that you cannot just rock up to the walk in clinic now, you have to get referred, so an added week of discomfort 🤷‍♀️

[Caza in reply to Sarahg62]

Yes I’d heard that Addenbrokes is the same but if you go to A&E you’ll get seen just have to wait ‘forever

[Sarahg62 in reply to Caza]

I went to spec savers who were very good, but had to wait 2 days for an appointment.

[Caza in reply to Sarahg62]

When told them, Specsavers what meds I was taking they offered me an appointment that day which I couldn’t make so I went 8.30am the following day. I thought they were brilliant. I’ve got my big eye appointment in two weeks times at the Royal Free. I hate it, makes me feel so tired afterwards. Not sure how it’s going to work wearing a mask 😷

[Sarahg62 in reply to Caza]

I went last June and September to Croydon Moorfields. Very quiet both times. Expecting it to be busier next week though. I was impressed with specsavers too.

[springcross]

Hi Sarahg62. I have regular eye injections but not steroids, I have wet AMD and have been having them for almost three years. Are you sure it's a steroid injection? I ask because the injections I have are anti-VEGF which are used to dry up the fluid. If it's the same as I have don't worry, you will be given anaesthetic eye drops first and they will check your eye with a special cotton bud to test that the eye is numb. After that, all you will feel is a slight pressure on the eyeball whilst the injection is given, all you have to do is keep completely still, it's all over in seconds. They'll explain it all when you get there so try not to worry, it's best to get it done. Good luck. x

[Sarahg62 in reply to springcross]

Thank you, that’s made me feel less anxious. The optician mentioned steroid eye drops. I’m sure Moorfields will explain further.

[sunnyweek]

Hi I have uveitis, mine is intermediate which is middle of the eye. I've head steroid drops and also injections. I have permanent fluid at the back of the eye and attend at least yearly. Never looked forward to the injections when I've needed them but they numb the eye first with drops. Then they keep the eye open with something same as when a cataract is done, you don't really know they are doing it, its painless, then inject and the doc may hold your forehead to keep your head still and I'm told to look left and there'll be a very slight pressure he says and its over. No sense of a needle going in. Sounds worse than it is. I'm sure you'll be fine, Good luck xx

[Sarahg62 in reply to sunnyweek]

The joys of RA keep on giving. I’ve had Anterior Uveitis for some years which is horrible, this is the posterior one. Only the middle one to go for a full set 😜😳

[sunnyweek in reply to Sarahg62]

Ha ha. I can add episcleritis and macula traction! I expect they gave you that card with lines on and they were all wobbly.

[Sarahg62 in reply to sunnyweek]

Only had letters shown to me at the opticians and I couldn’t see any of them 😬

[sunnyweek in reply to Sarahg62]

I think that's the fluid. The injection will mop it up as its a powder. I hope you'll post to say you went on alright.

[Sarahg62 in reply to sunnyweek]

I will 👍

[Green230461]

I have had uveitis and they gave me prednisone drops and dorzolomide. That was how they found out that my drugs for RA had stopped working. Got out of bed and thought I was looking through tissue paper. My friend goes to moor field and she says they are fantastic. All the best 🍀

[Sarahg62 in reply to Green230461]

I was on Enbrel for years, when I was then diagnosed with Uveitis I was changed to Humira, as this worked with Uveitis. It appears not !!

[Green230461]

They took me off humira because of my eyes and I am now on baricitinib. We will all qualify as chemists in the end🌺

[Sarahg62 in reply to Green230461]

Oh. Ok. I will have to speak to my Rheumy doc methinks. All such a pain. I’m sure I know more about my meds than some young doctors 😜

[sunnyweek in reply to Green230461]

That's interesting. I got iritis then euvitis when on methotrexate and humira. I was filling in forms for Manchester university as it was still new (humira). My consultant told me they were interested in me cos of the eye conditions. Interesting to hear your experience.

[Sarahg62 in reply to sunnyweek]

I am also on methotrexate, the drugs are good in the way they reduce the inflammation, but sadly the side effects add more problems. I have been on Humira/Idacio for 3 years, works well, but started having eye problems again last summer.

[sunnyweek in reply to Sarahg62]

Its difficult to fathom which drug causes what sometimes. I do hope your eye soon improves, its a nuisance keep going to the eye clinic, although very grateful.I had to come off humira and methotrexate as I developed pnemonitis and there are instances of both drugs causing this so I had to come off both.

[Green230461]

I can see a pattern emerging here!🤔

[Kags1068]

Hi Sarah

Sorry you are having these eye problems. It's horrible when RA affects your eyes. As a result of extreme dry eyes and corneal inflammation, I've had a lot of eye complications over the years consisting of rheumatoid/cornea melts (x4) in my right eye and resulting in 4 failed corneal transplants then a conjunctival flap pulled over my right eye to keep the eye (but lose the sight); relapsing Scleritis; Episcleritis and glaucoma (due to steroid drops) all in both eyes. In my remaining good left eye I've now developed something called Conjunctivachalaisis which is generally not dangerous, but it's grown to such a degree I've got have a minor op to have it removed next month. Thankfully, I've not experienced Uveitis - it sounds very unpleasant. Although I live in the Midlands, I have been a patient at Moorfields since 1994, as my local eye hospital weren't specialised enough to know how to proceed. I'm so grateful I got referred there - they have been fantastic. At the moment, I'm on shared care with Moorfields and my local eye department (they have a corneal specialist nowadays)!

Both Springcross and Sunny week have given very good advice. My experience of having a couple of injections into my eye following a trabeculectomy op some years ago was exactly as they described. The thought of it was definitely worse than having it done. Like them, I only felt a slight pressure when it was done.

Interestingly, when the Rheumatologist was trying to decide which biologic to start me on in 2007, he was concerned as there was a slight risk of eye problems with some of them. He wrote to Moorfields for advice and they advised against Enbrel, and suggested Infliximab or Humira instead. I started on Infliximab then moved to Humira (which I still take). I was also prescribed oral Cyclosporin many years ago by Moorfields, and that seems to have been the best drug for me for controlling eye inflammation, and I still take it now. Don't know if you've ever been tried on that?

Good luck with injections. 😊🤞

[Sarahg62 in reply to Kags1068]

Thank you for your informative reply. I use Maxidex eye drops daily following yet another flare last summer. I was told when i moved from Enbrel to Humira that I shouldn’t get any more problems. Annoying that it has come back again.

I also have dry eye, and occasional bouts of blepharitis. I have had RA for 40 years, but seem to have had more side effects from RA in the last few years than ever before. So frustrating.

I am very pleased we have Moorfields available to us, though i would prefer not to have to go there, obviously, but that’s a life sadly.

[Kags1068 in reply to Sarahg62]

Yes, that's very annoying you've had a recurrence after being re-assured things would be ok.

Coincidentally, I've had RA (JIA) for 38 years so we were probably diagnosed at a similar time (back in the olden days 😁). I agree that as the years tick by it does seem the disease likes to find other things to torment us with! God forbid it gives us a break, eh?!🙄

Hope Moorfields can get things back under control quickly for you. As you say, we'd rather not need them, but thank goodness they are there for us.😉

[Sarahg62 in reply to Kags1068]

Definitely. I was diagnosed in 1980, at least Meds have improved since then.

[Kags1068 in reply to Sarahg62]

End of 1982 for me. Yes, thank goodness we're not just stuck with Gold and Penicillamine any more!

[Sarahg62 in reply to Kags1068]

Never had Gold, did have some strange meds though and lots of steroid injections. I was 18 when diagnosed, and in those days you just did what the docs said. At least now the docs listen ( well mine does).

[Kags1068 in reply to Sarahg62]

Yes, they used to use steroid injections a lot to "tide you over." I had just turned 14, when I was diagnosed. A whole new world for us wasn't it?😳

It is quite different with the docs now. I got so used to doing as I was told, I still don't think I've adjusted to the new ways!😁

[Sarahg62 in reply to Kags1068]

Lol. At least there is a lot of info on line now.

[Kags1068 in reply to Sarahg62]

Yes, all we used to get was the odd leaflet written I the 70's!!😆

[Juliesb]

I've not had this myself but have had eye surgery twice and if they use numbing drops they are brilliant and you won't feel a thing. Good luck.

[Otto11]

Gosh that sounds awful & like you I would be scared too. It’s not something I know anything about but just want to say I hope all goes well for you. X

[Sarahg62 in reply to Otto11]

Thank you very much. Just reading up about the different uveitis types - not so sure they was such a good idea 🤣🤣

[Otto11 in reply to Sarahg62]

I know that feeling only too well. Xx