newly diagnosed

[galaxie]

just been diagnosed with toxic maculopathy due to hydroxychloroquine, been taking this for 14 years, far too long. Has anyone else experienced this with this drug.

[algee]

What is Hydroxychloroquine used for , I have been taking HYDROXYCARBOMIDE tablets for Essential THROMBOCYTHEMIA a blood condition for about 7/8yrs now I've had dry Macular for about 10yrs have been taking Macushield tabs for about same time and have had two cataracts seen to in the last three yrs also took advice from Macular society and had blue filters in both reading and distance glasses they help quite a bit my only problem is when I'm out and about I can't see faces until up close I'm o.k. Driving during the day's bit iffy at night I celebrated my 77th birthday on 13thmay so not doing to bad Al.Gee.

[galaxie in reply to algee]

I have sjogrens syndrome and scleraderma linked to rheaumatism. The medication was for the sjogrens.

[Hidden in reply to galaxie]

Hi galaxie, sorry to hear you have this problem. I read that its a known side effect of that rheum arthritis med and your gp should have had you checked regularly - hope they caught it early x

The Macular Society are very good if you need info on what to expect with the condition, what the gp / eye clinic should be doing for you, and if you just want a person to chat to about how you are etc. Their website is good with email and tel contacts too.

This forum is also very helpful, we have different conditions but many of the same issues so we "get" it and it helps to know we are not alone.

Best wishes to you.

[galaxie]

Thank you for the information.

[farmerfester]

I was taking hydroxychloroquine for treating SLE since 2001 a few weeks ago my optician discovered I had macular degeneration gp has prescribed macushield waiting for appointment for eye clinic they have not been checking eyes often enough g

[galaxie in reply to farmerfester]

I was diagnosed with Toxic Retinopathy by specialist at Maidstone health authority. I had electrical test done at Moorfields eye hospital. Like you the only checks that was done was by me visiting the opticians but these are just normal eye tests even though they knew I was on Hydroxychloroquine. The opticians that I use to go to did not pick up any problem, even though there seemed to be a problem with the field test. (well known opticains cant mention the name.) . My eyes seem to be getting worse so I went to a different optician for my usual eye test this optician is Asda and they picked up on the field test and referred me straight away to the Eye Hospital at Maidstone. I cant thank them enough as there is no telling what might have happened to my eyes. I was on this tablet for 14 years. I looked on the internet and after 5 years you are supposed to be checked but the specialist just tell you to see your optician I do not think this enough as the test are not as thorough as the hospital. I am no longer on this tablet. My husband is very angry and wants to take this further but what good will it do. Good luck for the future.