Diagnosis update and some plaquenil questions.

I always took my Plaquenil in the morning - best to take with some food. Most people have a little stomach upset for about the first week. If you have it more than 2 weeks definitely try switching to brand name.

Plaquneil helps very subtly. For most of it, we didn't really notice it was doing much unless we stopped for a week -- and then our eyes were opened!

Hope those lungs are working well today!

The "real" test is a field of view test. The color test is a weak second indicator.

Plaquenil and Your Eyes

Plaquenil sometimes affects our eyes. What it does is constrict the field of view. That is, takes away some of our peripheral vision.

The test is usually a big round box-like thing, you look into one eye at a time. You click a button every time you see a light flash. It flashes all over at different places randomly. They can tell from your clicks if your field of view is being negatively affected by plaquenil.

You need to have this test every year. If they detect an issue, you will be instructed to stop taking it and your eyes will return to normal.

Thanks for the info! The eye doc didn't do a test like that but I had to get glasses and he wanted to see me to see how the lenses were working for me so I'll definitely bring it up when I go back. I think it's in a week or so. Being on this forum has been such a great help! It's awesome to be able to get your feedback and info on stuff like this :) many thanks to you all.

I've had some nausea but I have that anyway so who knows if it's the plaquenil or something else. Either way it could be worse so I'm not too overly concerned. I'm likely not eating enough due to the pneumonia. When I'm sick the appetite is always the first thing to go.

My lungs are getting there Lynnwood, thanks :) I have to go for another chest x ray on Monday and see what's happenin. I initially left it too long but I hate having to go running to the doctors all the time, they always find something wrong lol. Honestly I think that is what I hate most is the disruption this has caused in my life. I have no such thing as free time anymore. I'm either too sick to enjoy it or having to have some test done or go to the doctors for some new bothersome thing. Oh well, I keep telling myself it could be worse!

And hopefully the plaquenil will improve my quality of life a bit. I'll take subtle improvement! Bring it on plaquenil!! cough cough hack hack it could be worse, it could be worse lol.

Thanks, I've been taking it in the morning and all seemed well until today. Let's just say that this will be forever remembered as the day I spent in my bathroom! Yes the whole day!

My poor stomach just aches. I'm hugging my heating pad. Please tell me this is temporary.

Plaquenil can be a wonderful drug to treat lupus and many other autoimmune diseases. I've been taking it for many years, probably 15+. Because I'm also diabetic, I've had a retina specialist specialist checking me twice a year, doing all the standard tests mentioned above. I began to have vision disturbances about 15 months ago - it appeared as double vision to me, but gradually worsened and started including difficulty with low light, blank spots in vision, blurred vision, photosensitivity and more. I told both eye doctors, my neurologist (who referred me to a neurologist at a major teaching hospital), my rheumy, and my PCP. Finally my rheumy asked if anyone had referred me to a neuro-opthamologist (they hadn't), so he did immediately. He saw me, said he was concerned about plaquenil toxicity. I naively commented that I didn't think that was possible because I've been monitored faithfully for years and have had no plaquenil changes. He said that often happens, but that a test called a "multifocal ERG" can actually test the cells of the retina. You almost always have it done at a hospital, most regular eye doctors (even retinologists) don't have the equipment. With 48 hours I had the diagnosis that I have plaquenil toxicity in both eyes and have to stop the plaquenil immediately. So I'm waiting for the impact of no plaquenil to hit. But most of all, THE DAMAGE IS IRREVERSIBLE AND WILL WORSEN BECAUSE PLAQUENIL STAYS IN YOUR SYSTEM A LONG TIME. Please, please remember this: If you are on Plaquenil 5 years or more, ask if you should have a multifocal ERG test. All my eye specialists had been monitoring and nothing showed up, but that's because it often doesn't without this test. There was a change to the guidelines in 2011, recommending the ERG and/or other tests. All the usual tests - Amsler grid, field of vision, etc. - are important, but they may not detect plaquenil toxicity and retinal damage until it's too late, and it appears even many experts are not aware of this. So regardless of the fact that this is relatively rare, it's not rare enough that they don't tell you to be monitored. Please make sure to ask about that test if you're on Plaquenil for 5 years or more.

Thanks Couchtater, I am trying some probiotics and am able to eat soup now and the cramping isn't as bad. I'm just going to go easy on the ole stomach and ride it out. I hear of all the benefits of plaquenil so certainly some tummy trouble is something I can deal with ;)

JSue I'm so sorry that you have had to go through this and hope it gets out of your system soon. Thank you so much for sharing that information. It's something we all need to know. I hope the damage is minimal.

Hugs,
Joie