eye problems?

[Littleandperfect]

Have just had a Hydroxy eye check referral to my local hospital where I was told I have a significant change in my right eye due to fluid build up affecting the retina. Having read Dr Google this is a serious concern. The eye specialist will be contacting my gp and myself within 2 weeks. Has anyone else experienced eye problems? Due to Lupus or Hydroxy? Thanks for any advice .

[StriatedCaracara]

I have a choroidal lesion (layer beneath retina). Had it from before taking hydroxychloroquine. Retinologist wants me to stay on Hydroxychloroquine.

I think a lot depends on cause, whether change is due to hydroxychloroquine and / or the risk it poses to sight in one eye.

So for me risk is low and I'm on 300mg / day Hydroxycloroquine.

Also though now taking 50mg Mepacrine three times a week. Works well often in combo or on its own.

In my copy of Dr Donald Thomas' Lupus Encyclopedia 1st Ed. p518 It says the antimalarial Quinacrine (Mepacrine) does not affect the retina so can be used in people with eye problems that prevent them being on Hydroxychloroquine.

I think it is more often prescribed by dermatologists but my rheumatologist prescribes it.

Maybe a fallback option for you if you are ever advised not to take hydroxychloroquine for any reason.

Relief there is another antimalarial, only wish it was licenced, and also that GP could prescribe on NHS.🫣

[Littleandperfect in reply to StriatedCaracara]

Thanks for that info… I have had Mepaprin before with no ill effects so that may be an option… appreciate your input

[Whippet_lady in reply to StriatedCaracara]

My GP prescribes mepacrine and I've never had any problems. Dermatology prescribed it initially but my GP took over.

[Juniperm]

Hi I posted a similar situation at the same time. Please see my post under juniperm. StriatedCaracara replied to me as to you. My Optician says the layers of my retina were thinner as i was concerned it was like my Mothers Macular degeneration(fluid) which affects her greatly. Am seeing Opthamologist next month, so hope to have a clearer idea.

[CecilyParsley]

Hi My fluid on the maculars was spotted by the optician doing an OCT scan at Specsavers. I was sent to the macular unit because my peripheral vision was affected. The Opthalmologist decided he did not want to see me as it was not significant enough. I had to come off the Hydroxychloroquine and was off it for two years. I am now back on a lower dose but no lasting damage for me. Good luck I really hope that the eye specialist can help you xx

[Vixen2]

Hi i’m 52. I’ve had RA & Iritis & Glaucoma for 31 yrs. Iritis is inflammation of the eye. I’ve had 2 catarracts removed, loads of steroid injections in the eyes & loads of ops. When i have a flare of Iritis. If i don’t have an injection. I have to have hrly steroid eye drops every hr for a week. Plus i have to have pressure drops. Then taper down weekly, slowly. I shouldn’t moan. I’m very lucky. I’ve been going to Moorfields on Old St for 30yrs. Only a bus ride away. I’ve met people as far away as Cornwall & Liverpool that have had to go there! They need to takes ferries & trains!!!! It’s a very well thought of hospital. The staff are 99% lovely. But the last flare up i’ve had a couple of months ago, was so painful. I could hardly open my right eye. Burning, aching, throbbing. I couldn’t stand the light & i was getting massive headaches. I went to Moorf. Waited 3hrs to be seen. (Which is quick for this hospital). Sometimes i’ve waited 5/6hrs. The pressure was high in both eyes. Especially in the left. (39 & 23 in the right). I was so relieved to hear my name being shouted out. I don’t think the dr checked my notes. He mostly focused on the left eye. I told him of the pain in my right. I told him i’ve had this condition for yrs. He wouldn’t listen. He sort of had a go at me for self diagnosing. Told me to come off the steroid drops straight away. I said shouldn’t i taper them off slowly? He said you haven’t got Iritis in either eye. I was shocked. I can usually tell within hrs when a flare’s coming. But i listened to him. Stopped straight away. The next morning was total, total agony. I was scared. I just knew i was going to need an injection. Went back that day. Had to wait 5hrs. I was fuming about that dr. The fact he wouldn’t listen to me & i felt rushed. So i’ve put in a complaint. The fact i’ve been going there so long. I know my own body. I know when i’m going to have another flare up. The dr WOULDN’T LISTEN TO ME. I’m wittering on. Good luck with your health stuff. I know we’ve all got crap on here. I’m nust so grateful for the NHS. My treatment would have cost a massive fortune if i lived in the States! X