Diagnosis update and some plaquenil questions.

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acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/7/2014 6:47 AM (GMT -6)   
So I saw my rheumy again yesterday and the latest results of my bloodwork she says are not a "slam dunk" lupus diagnosis. That being said she believes it is lupus and is going to start treating it as such. We are calling it UCTD for now although she will continue to see me at the lupus clinic as my symptoms are "lupus-y". She makes me chuckle with the words she uses!

I've been started on plaquenil, 400 mgs a day. From what she told me and what I have read here from you lovely posters is that it takes a while to start to work. Nevertheless I am so relieved to have some relief on the horizon! Also luckily enough I just had my eyes checked last week so I can tick off that box for knowing what shape my eyes are in before starting it.

She prescribed the brand name plaquenil but the pharmacist gave me the generic so I'm hoping it won't be too hard on my stomach. I'm already having some issues with the celebrex although changing my diet around has helped quite a bit. I have a history of ulcers.

Is there a time of day that is preferred by any of you to take plaquenil? Do you have any stomach issues/remedies that have come up?

Oh and that nasty cold I had, it turned into walking pneumonia :P so if anyone has a history of respiratory problems be careful if this horrid virus comes your way (which I hope it doesn't!)

Thanks for your wisdom and ongoing support,
Joie

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 3/7/2014 8:50 AM (GMT -6)   
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!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/7/2014 10:59 AM (GMT -6)   
My eye doctor says the test for plaquenil is a color blind test. Did he do that?

I love my plaquenil.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 3/7/2014 11:58 AM (GMT -6)   
The "real" test is a field of view test. The color test is a weak second indicator.

Plaquenil and Your Eyes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

ediekristen
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Date Joined Apr 2007
Total Posts : 1366
   Posted 3/7/2014 3:34 PM (GMT -6)   
What do they do the field of view test for? What is it an indicator of?
Ulcerative Colitis dx 1999 - 2nd major flare started in 2003, tried every medication available, became resistant to prednisone, started Remicade in 2008... Went into remission finally but then developed drug induced Lupus in 2011. Went off Remicade in 2012, lupus symptoms went away and I've been unmedicated and still in remission since then, with occasional flare symptoms lately.

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 3/7/2014 4:03 PM (GMT -6)   
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.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/7/2014 5:46 PM (GMT -6)   
I definitely take Plaquenil in the morning. I have been on it for a long, long time with no side effects. No stomach issues either....and I did have problems with Celebrex years ago, I get twice yearly checks on my eyes.

Laura

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/8/2014 6:58 AM (GMT -6)   
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.
Lupus or maybe not now :P , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

reibies
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/8/2014 8:51 AM (GMT -6)   
I take my plaquenil, or whatever meds I am on,mid morning when I eat my yogurt... usually 10 am after I finish my morning med pass at work.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/11/2014 8:49 PM (GMT -6)   
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.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/11/2014 9:01 PM (GMT -6)   
Try some probiotics to soothe your tummy.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

JSue
New Member


Date Joined Apr 2013
Total Posts : 5
   Posted 3/15/2014 12:15 PM (GMT -6)   
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2014 4:04 PM (GMT -6)   
I've never heard of that before. I've been having vision issues lately and this is coming up my fourth year on 400mg a day plaquenil. I'll talk to my eye doctor.
Thanks for the info.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 10:57 AM (GMT -6)   
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
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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