Advice please

[Caza]

I’ve been taking hydroxychoroquine for nine years now. Up until this year they were working well with no side effects. Since October I’ve been flaring regularly my joints have got a lot worse, as in painful & swollen. But also I’ve been feeling sick & have really itchy skin with a rash on my chest. Pretty sure it’s the hydroxy. I had a phone consultation with my rheumatologist he arranged for bloods X-rays & scans. My next phone consultation is September. My problem is this, I normally go to the eye clinic once a yr as well as seeing my optician. My November appointment was moved to February & then was cancelled no other date was given. My rheumatologist wrote to them again three weeks ago but nothing. I had my yearly ( which of course was a yr late) appointment with my optician she said my left eye has changed as in I have astigmatism. She said I need them scanned. Since then my right eye has become really blood shot. So my left is ‘jumping’ & the right is a bit blurry. I’ve phoned the clinic loads of times must be at least 20 left loads of messages not once has anyone answered or rung me back. I’ve also left messages on my consultants answering machine. I’ve tried to look up eye problems with taking hydroxy but haven’t got very far. I know we’re not supposed to ask for medical advice but you folk on here are so knowledgeable. Should I be worried & what do I do next? Many Thanks

[helixhelix]

I would go to your nearest branch of Spec Savers or other high street optician and book an eye test and ask them to check you over. They all know about hydroxy and can do retinal scans, so £10 might give you peace of mind?

Risks are still very small, but do increase after you have taken 1kg of the stuff so quite right to be careful

If need be give them this

rcophth.ac.uk/wp-content/up...

[Caza in reply to helixhelix]

Yes of course brilliant. I didn’t realise that they could do retinal scans. Thank you.

[Boxerlady in reply to Caza]

I have retinal scans at my opticians and she's very knowledgeable about Hydroxychloroquine which I find reassuring.

There's never been any mention of eye tests through the hospital (other than the rheumy nurse mentioning that I should have annual eye tests) so I just arranged it for myself.

[Caza in reply to Boxerlady]

After 5 yrs on the drug I’ve been called into the hospital to have a thorough eye check once a yr but Covid..... I go to my opticians once a yr for my glasses but she doesn’t have the equipment to scan eyes.

[springcross]

Hi Caza. One other thing you could try is ringing the ECLO (Eye Clinic Liaison Officer) at the eye clinic - that's assuming they have an ECLO. The one at the hospital I attend is usually very good and acts as a go-between if there are any problems. I hope you can get it sorted as it is a worry and I understand how you feel. Good luck with it. x

Just had another thought, do you have an A & E at your eye clinic and if so, you could try that - you would be sure to be seen then. x

[Caza in reply to springcross]

I’ve rang every number on the consultation letter that I have, even got through to the finance department, they didn’t answer either. I rang the switchboard, which is the only call that was answered as in an actual person. She was lovely & tried to get through to the clinic by various different extensions but no luck. She did say I should take myself off to A&E but my hospital is in London The Royal Free which is quite a trek on the off chance of someone seeing me. If my eyes had been as bad last week as they are now I would of gone. I’ll try spec savers first then if no luck A&E on Wednesday won’t have my car before then. Thanks for replying

[springcross in reply to Caza]

That's awful. Good luck, I really hope you can get it sorted. x

[Summerrain14 in reply to Caza]

Hi, so sorry to hear of the difficulties that you are having. I am an ECLO up in the North West so have just looked on the register of us ECLO’s. I don’t have a name sadly but have a contact number for the ECLO at London Royal Free Hospital which is 07748 657442 and email address of [e-mail]. I hope this helps a little but if not let me know and I will do some more digging to get you in touch with the ECLO. x

[Caza in reply to Summerrain14]

Oh wow, thank you so much for that. I’m not having much success. The walk-in eye clinic you can no longer go to without a referral & specsaver can’t book me in until Wednesday. Needless to say nothing from the Royal Free. What would I do without you folk on here. In the meantime my eye looks like it’s swimming in blood & that’s meant to be the good eye. I’m sure all’s well but just need reassurance. I’d hate to of given up trying if there’s something amiss. Feel exhausted & done nothing apart from making endless phone calls 🙄

[Summerrain14 in reply to Caza]

Do let me know if I can help further won’t you? You definitely need to be seen lovely. Thinking of you. x

[Caza in reply to Summerrain14]

Nightmare of a day. The walk in eye clinic at Addenbrokes is no longer a walk in due to covid. Referral & appointment only. The opticians that said that I needed a scan is shut today short working week due to covid. Spec savers the earliest that they can see me is Wednesday but they can scan my eyes & refer me to Addenbrokes if need be. So I’ve held off ringing the number you gave me until Wednesday. Thanks for caring 🤞all will be ok. I’ll let you know x

[Summerrain14 in reply to Caza]

Bless you. Getting seen by Specsavers is the priority for sure lovely. The referrals are received very quickly. Around 24 hours max and if there is a problem needing urgent treatment you will be seen within a couple of days at the very latest. Up here all the opticians can refer and send over the scans via email to the eye hospital I work at and they reviewed within 24 hours at the most as they have a team who’s job it is to review all urgent scans and referrals. The great thing about this is you will be seen by the right team too rather than having to wait following a visit to the emergency eye department. Do let us know how you are won’t you and if you need the ECLO’s details for Addenbrokes do let me know as I can give them to you. x

[oldtimer]

My optician is excellent at examining the eye and doing retinal scans. Make an appointment and explain what's worrying you. But it does sound as if you need a change of treatment anyway.

[Caza]

Yes I think I do, I’ll have to wait until September for the results of all the tests I guess. Yep I’m going to phone spec savers right now.

[Boxerlady in reply to Caza]

Good luck - I chose my new optician because she offered the retinal scan

[Caza]

The optician I see has become a good friend over the years so difficult as she hasn’t kept up with the latest equipment but I felt ok going there because I had the back up of the hospital or thought I had 😡. I’ll need to re-think it. I’ve found out that Addenbrokes has a walk in eye clinic so I’m going there this afternoon 🤞

[Boxerlady]

Great - good luck and let us know how you get on 🤞🍀

[sylvi]

I am on hydroxy as well and i go in often to see my optician about my eyes, but i have been wondering for a little while if the swelling and dryness and vision problems i am having with watching the tv is related to that. Also i am finding i can't go outside without a hat on to shield my eyes. I have reaction lens and i now also put a pair of sunglasses on as well. xxx

[Caza in reply to sylvi]

Yes I’m the same x

[Anniebl24]

There will be an optician somewhere doing medical emergencies, I believe it is called MEC appointments. Call around and try to find out which one is doing today or this week, they will see you and if necessary send you to an eye hospital directly. This happened to me and they sent me to the eye hospital with an urgent referral.

[Caza in reply to Anniebl24]

Thank you. I will make a note of that. I’ve got an appointment with Specsavers 9am tomorrow. They are going to scan my eyes etc.. & refer me to Addenbrokes eye clinic if need be. 🤞they’ll be no need.