Sjogrens World Forums

Hi Everyone....  Life's been busy.  I try to read posts a few times a week and respond when I have something worthy or witty to say.

I began taking Plaquenil in July or August 2008.  I'm taking 2 pills/day.  I honestly don't know if it is having any effect on my joint pain in my lower legs and below or not.

Last week I had my first Visual Field Test (on a Humphey machine) at my eye doctor.  My eye doctor explained that I have some weakening or loss and he's recommending to my rhemuotologist that I discontinue the Plaquenil.  When, prescribed, I knew there was a risk of blindness with the plaquenil, and was told that the newer version is not as bad and the condition is reversible.  What I did not know is that the visual field is affected, I didn't even know it existed.  The eye doc explained that it visual field defects are not reversible.  Some research on the web also indicates that the defects can occur well beyond the discontinuing of the Plaquenil. 

The good thing is I really don't think i notice any visual field defects.  I blame all my eyesight issues on my age (48) and just having bad eyes since age 5.  The eye doc thinks some of my eyesight challenges could be the defect and will monitor.

So........ tomorrow I am seeing my Rhuemotologist for my scheduled appointment.  I'm anxious to see what he says and where he may steer me.  I was planning on telling him that I don't think the plaquenil works for me and what other options do i have.  Thankfully, my symptoms are not as harsh as some of yours are.  Sometimes i get a bit tired of it all, but I manage.

Have any of you experienced a loss of visual field from plaquenil???

I'll keep you posted after my appointment.

Thanks!
Dave

Hey Dave,

How many field vision test have you had?  Each time I take one the results get better and better, I think it's like a video game the more you play, the better you get.  That machine freaked my out the first time I used it and was pushing the buttons at the wrong time.

Epson,
This was my first test.  I wondered about that too.  he did give me a practice sesssion before doing each eye.  Since I only had one button to push, and my eye/hand coordination is very good, i'm not sure if it matters or not.  I'm glad to hear yours improved!

Thanks,
Dave

Best of luck with that...Hopefully your doc can give you an alternative to Plaq.   ;D  Keep on pluckin!

Dave,

My doctor said that most people improve their test scores not because of vision improvement, but familiarity with the equipment.
Just a thought.

Hi Dave   :)

People are meant to have a baseline sight test before they are started on Plaquenil. Otherwise how can one know whether Plaquenil could be responsible for a difference?

I'm sorry if you Plaq is responsible. It would make you one of the rare few affected that way. I had a fright with my last visual field test. It showed a loss of vision on one side but they told me to come back in two weeks to repeat it. I did. They used different equipment and I passed with flying colours, which was a relief.

It will be interesting to hear what your rheumy has to say.

Take care - Scottie

Scottie,

Good point, also Plaquenil can be seen on the retina when they look into your eyes with that blinding light they use.  I think the doctor said it looks like little white crystals.

I have to have the visual field test done yearly because of the glacoma.  It makes my eyes water like crazy when I'm doing it and can't wait till it is over.

I have to have another one next month and this will be the first once since starting the medicine.

Thanks for the replies.  Scottie, I thought that myself but that was part of their plan that i would take the test about 6 months after starting the plaquenil.  I had other eye tests done several months ago.  Retina wise, i'm doing fine.

As I said originally, I'm not certain the plaquenil is doing anything for my aches and pains.  I haven't had the bad itching since then, but I don't typically have that very often. 

I'll keep you posted when i get back tonight.
Thanks again.
Dave

Sorry for not getting back sooner.  I had my appt. with my rhemutologist and he does not think that i've been on the plaquenil long enough to cause any visual defects.  I believe he said it usually takes 4-6 years to cause a loss of field of vision.  therefore, I am to continue the plaquenil and we'll check back in september.  I'm still not convinced it is doing much for my feet/ankle/leg pain.  He also put me on 15mg/day of meloxicam, an nsaid.  After taking this for about a week, i'm still having the same ache/pains but maybe not to the same intensity.  not moving around causes pain........and the alternative, standing around or walking slowly (shopping) causes greater pain.

thanks ..... hope all are well.
Dave

Dave,

Meloxicam is the generic for Celebrex.  That was another of the meds that the insurance made me change to.  I haven't tried it yet as I still have Celebrex.  My PC said it would be as good at the name brand though.

Actually meloxicam is the generic of Mobic, while the generic of Celebrex is celecoxib. They are both NSAIDS, but different types, with slightly different pathways of effect, but the same possible side effects and warnings.

Sassiecat, if your insurance company insisted on a change from Celebrex to meloxicam, they have essentially changed your prescription and should be brought to task for that, the pharmacist should have noted that.

Here is a link to the side effects and dosing instructions of plaq.If you read to page three there is talk about how quickly field vision /corneal changes can occur once the med is started..that is why you are supposed to have a baseline exam before you start the med so they know where you were at the beginning.

It also recommends that after 6 months the med be discontinued if you arent acheiving the desired results from it.

But the damage (when it does occur)does not take 4-6 yrs to develop and can often progress somewhat after the med is stopped.
http://www.rxlist.com/plaquenil-drug.htm

Sassie and Linda - i was taking Motrin (or a generic) to help with some of the pain and aches.  The reason I went with the moxicam was because it was once a day and I can get 30 day supply at walmart for $4.00.  That's much less expensive than generic motrin over the counter. 

Kim,
I was reading that too.  Thanks for sharing that site.  Vision-wise, i'm seeing about normal and i know the retina is good.  I am probably going to keep with the plaquenil for now and give a call to the eye doctor.  I wonder if i did have a test before. 

Thanks
Dave

Linda,

Doesn't surprise me.  They send me letters saying that the medications need to be changed to generic and when the doctor writes it for a generic they switch it to another cheaper generic.  The doctor is aware of this and we have to write DAW on all my scrips now.  This is what happend when they switched my HRT, I ended up with something entirely different and my body had a bad reaction to it.  I even called the insurance company (mail order) and complained that they keep switching from a generic to something else.  They said that if the doctor writes a script for a generic then they change it to a generic of thier choice because the doctor didn't instruct them to disperse as written.

Thanks,
Marianna

My point was, meloxicam and Celebrex are different drugs, not just different generic brands of the same basic drug.

It's one thing to switch from Celebrex to celecoxib, then to celecoxib manufactured by different companies (not a good thing necessarily, but one example) but to switch to a totally different drug (unless your doctor wrote meloxicam instead of celecoxib if he re-wrote the RX to allow generic, which it doesn't sound like he did) is practicing medicine, and your insurance company can not do that.

If it is standard practice where you live to switch drugs, not just brands, based on the insurance company, you should involve your political representative, and local or federal medical/pharmaceutical professional association, because, as I said, allowing insurance bureaucrats to write medication orders is allowing them to practice medicine, and has to be stopped.

HRT is a different case, because as long as the substitute contains the estrogen, progesterone and/or testosterone in the same ratio, they can (chemically at least) all be considered the same medication, and its the fillers and source of hormones that make the generics different, and that can make a huge difference.

Switching your Celebrex for meloxicam is sort of like switching your estrogen for insulin...obviously not the same thing, although in the same class of drug, hormonal.

The field vision test is the one where you take off your glasses scoot up to a machine that focuses you into a dome shaped enclosure(blocking out anything other than directly in front of you)they give you a push button and have you stare straight at a focus object.You will see flashes of red and green dots pop up in your vision field but are not supposed to track by moving your eyes only what you can see while focusing ahead and you push the button every time you see/think you see a flash.

I hate them.I am always thinking wait!was that one?!Push the button push the button :D

Kim,

Me too!!!! Was it really a  light or was it my anticipation of a light?  My eyes water sooooo much during this and they don't want you to stop or pull away until it's done.  Once I just couldn't help it cause my vision was so blury from  the tears and I backed away.  They had to start it over again from the beginning to keep the position my eye was calibrated to.

It's not one of my favorite tests either.

Sassie