Retinal Toxcity &Hydroxychloroquine

[Mrsdoozer]

HI Everyone ,I haven't posted in a while just been jogging along quietly taking each day as it comes.

I was diagnosed with Lupus in 1999 along with sjgreons .I have taken Hydroxychloriquine since diagnosis along with all the other meds associated with this disease. When first diagnosed I was being sent to the eye clinic at hospital to check my eyes yearly. My consultant then retired after 5 years and the eye clinic visits stopped . I had my eye tests regularly with my optician and spent a fortune on new glasses . Long story short I have kept on top of my eye care the best I can . Eyesight is precious

Last year I was contacted by the specialist eye care team who are now now doing yearly checks for those of us on hydroxychloroquine. I was greatful and apprehensive to have the test done but it was fine nothing awful and the result was good.

I had my second yearly test done recently and recieved a letter from the team saying I need to speak to my consultant and be seen in eye clinic. Within in a day of receiving the letter my consultant is on the phone saying I must stop immediately the hydroxy there are changes behind my eyes. Within hours the eye clinic are on the phone making an appointment for Wednesday.

Now I know the NHS has its faults and long waiting lists I'm now shaking in my boots but wow they move fast when needed and I am very greatful and humbled . When the consultant who is usually very short and sharp in mannerisms and dismissive phones you personally you know its not good news! He then goes on to say take care and look after yourself at the end of the call then you know something is very wrong . The appointment is made within days for eye clinic that has huge waiting times for appointments and your told the consultant wants to see you face to face to discuss the results after ...you know your in trouble.

My eyesight has changed a bit but I assumed it was just the Sjgreons & time for new glasses. How wrong am I! However it is what it is and I have to turn and face this situation and hope for the best .I'm trying to remain calm. I am thankful that the issue has been caught before it's got to bad I am one of the lucky ones

However now stopping the hydroxy I'm starting to hurt more .I am on immunosuppressents and my consultant has said hopefully they will keep things in check but I am already feeling it .

My question is ....has anyone else been through anything similar ? How have you dealt with it and can anything be done to help or what is the next step ?

Take care everyone xx

[Betty909090]

Hi there,

Sorry to hear your story but my experiences with HCQ and retinopathy point to probable covid lockdown neglect.

I have posted about this issue many weeks ago and responses here have been enlightening.

Have a read:

healthunlocked.com/lupusuk/...

Regards,

Betty