Are you taking hydroxychloroquine (Plaquenil)? How often do you have your eyes examined by an ophthalmologist?

When the doctor found out I was losing my vision the meds were stopped but it happened so fast and so bad that I never regained vision in left eye. But my lupus is really bad. I have done chemo therapy twice to control it but every time I am done with a 6 month round lupus fights back and kicks my butt. I just dust myself off and fight back!

I see a neuro-opthamologist every 3 months. I swear my doctors go on vacation after every office visit:-) “I can’t afford to go on vacation but here let me help pay for yours” is what I want to say.

I had slight cataracts in my right eye and macular degeneration started. I'm so glad I'm stopping the Plaquinil now before it causes any more damamge. Thank you all for sharing!

Hello Ward,

Sorry to hear it affected your vision in your left eye and your sight sometimes can never be corrected how it was...Love your fighting spirit concerning your Lupus because however strong it maybe for alot of us, all we can do is carry on.

Hugs Terri xxx

ward0818 said:

When the doctor found out I was losing my vision the meds were stopped but it happened so fast and so bad that I never regained vision in left eye. But my lupus is really bad. I have done chemo therapy twice to control it but every time I am done with a 6 month round lupus fights back and kicks my butt. I just dust myself off and fight back!

Hello dawnloree,

Are they going to help remove the slight cataracts in your eye before it can get worse?....and stopping the plaquenil at this atage may help your eyes from getting worse.

I do hope your ok otherwise...hugs Terri xxx

dawnloree said:

I had slight cataracts in my right eye and macular degeneration started. I'm so glad I'm stopping the Plaquinil now before it causes any more damamge. Thank you all for sharing!

I just moved to the area I'm living in last September. Time to get myself back to see if the cataracts are worse. I only notice them towards evening or when I'm driving at night. I would really like some health insurance before I start that journey. Right now everything is out of my pocket. Since the Rheum. prescribed Ultram, Doxepin (allergies), Prednisone, and Flonase Spray I haven't felt this good in a long time. Ultram seems to be the thing that works best for my pain. I wish some of the many Dr's I've seem would've prescribed it sooner. Once I can get myself to wear the cpap machine all night I will celebrate!

Thank you! It's a deal! I was dx with them 3 years ago at 45 yrs old. With insurance they wanted to wait. So I'm thinking hopefully in a couple of years I will have insurance again before anything else falls apart! :-)

Hi dawnloree,

Your quite right there with what you've just said "Before anything else falls apart"....as we never know what can happen next. xxx

This is crazy! I'm up and around by 7:30 a.m. on a day off. So wish I had gone to this Dr. sooner... also that it lasts!

I just started taking plaquenil, about 2 months now. I didn't have an eye exam, but I'm over due and I need to schedule one soon. I've noticed a change lately, I could get by without my glasses until now. I hate bifocals ; p

Trisha

Hi Trisha,

You need to get your eyes sorted mate and keep ontop of plaquenil...because i can thing it may affect others eyesight quicker than others.

Best of Luck Trisha and all my love Terri xxx

sunrisetrisha said:

I just started taking plaquenil, about 2 months now. I didn't have an eye exam, but I'm over due and I need to schedule one soon. I've noticed a change lately, I could get by without my glasses until now. I hate bifocals ; p

Trisha

I had to take a baseline exam before starting Plaquenil, and my Rheumy is having me go to an opthamologist 2x/year.

I am still feeling good after stopping the Plaquenil. Still more blood tests for the new Rheumy. But I'm following his directions and trying to get myself use to my cpap machine. UGGGHHHHH! At least the muscle and joint pain has eased up to where I haven't felt this good since ...? Hopefully that isn't just the prednisone he gave me for my allergies and getting use to the cpap. Whatever works I'm taking it! Also, I am trying to get myself talked into going to the gym and sign up today. I hope all of you find some relief somewhere. Life shouldn't be such a battle!

Thanks Ann! The gym is my last hope, I've tried just about everything else. Now to make myself stick with it. It will be worth it I know... but I hate exercise!

Oh well....after commenting on Ann's thread and not seeing an opthalmologist since starting the plaquenil the first time around...yesterday an appointment dropped through the door to see an opthalmologist for a field test on the 12th september, then 5 days later to see the specialist.

Now either my GP as been intouch through restarting the plaquenil or the opticians done it and i'm just hoping the specialist lets me keep taking them till i see the new rheumo.

Thanks Ann.



Ann A. said:

Good luck Tez,

Hi, I'm new to the site, and am reading through all the very interesting posts on here!

I take Plaquenil, was send for an eye exam before I started on it, and have been having yearly exams since. Interesting to read that twice yearly used to be recommended, I'll have a word with my consultant at my next scheduled appointment in November

I wish I had known all this I was on Plaquenil for almost 20 years and in the last 4 years have had 3 retina reattachements, i cataract removal and several yag laser treatments. could my vision problems be due to this medication?

Hi Julie,

After taking it for 20yrs i'd say there's a good chance with the drug...as it's a shame it cn affect the eyes as it so good at doing it's job.

Your surposed to see a ophthalmologist every 6mths to see if the drugs causing damage...although you've had these corrections to your eyes done...have you been seeing an
ophthalmologist otherwise plus the specialist/s who have been treating you should take concern in your meds besides.

Julie here's a couple of links about plaquenil but Ann will also give you more insight when she's on line also.

http://xpil.medicines.org.uk/ViewPil.aspx?DocID=10971

http://arthritis.about.com/od/plaquenil/a/plaquenil.htm

Hugs Terri xxx
Julie said:

I wish I had known all this I was on Plaquenil for almost 20 years and in the last 4 years have had 3 retina reattachements, i cataract removal and several yag laser treatments. could my vision problems be due to this medication?

I'm glad you posted this Ann. I had my vision checked yesterday, and everything is healthy. My opthalmologist said that Plaquenil can cause nerve damage. He did say that my close up vision has changed but that is just from becoming "less young" lol. I ordered a new pair of glasses with a purple shade and progressive bi-focals. Boo, hiss. My doctor offered to send a report to my Rheumie as well. Some docs play nice : )

Trisha