I need advice on Plaquinil!

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New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 3/29/2009 5:05 PM (GMT -6)   
Hi everyone
I have been taking Plaquinil for 9 months now and don't really even understand why.  All my doctors say is "it seems to help" but THEY don't know how or why. Despite sun avoidance and sunscreens, I still have 2 new lesions.  The scare of eye problems with this med, the cost of seeing the opthamologist every 6 months, the meds themselves-I'm thinking of discontinuing the Plaquinil.  Does anyone out there have a better idea of what it does? I need your advise since all 4 of my doctors don't seem to understand how it helps discoid lupus. Thanks for any help.
Dx:Reynauds 1995, Hashimotos 2007, Discoid Lupus 2008
Rx:Plaquinil, Nifedipine, Wellbutrin

Regular Member

Date Joined Jun 2008
Total Posts : 363
   Posted 3/29/2009 6:14 PM (GMT -6)   
I didn't think plaquenil was doing much for me until my Rheumy cut me off it. The fatigue and rashes exploded. It works in the background, I was much worse before plaquenil and off of it as well. It has helped alot to keep my hives at bay. I still have occasional skin flare ups but no where near as bad or long lasting. It also took about 6 months for it to start working for me. Have patience. Also I get mine through Xubex online pharmacy for $30 for 180 tablets. You can also apply directly to manufacturer for assistance through www.pparx.org. With the eyes, my eye doctor saw absolutely no signs of any toxicity in my visit that I was told to follow-up in one year. I have since learned that our Walmart eye care center has very inexpensive exam fees and they will do the visual field test for $20.00. I wish you the best of luck.


PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.



Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 3/29/2009 8:45 PM (GMT -6)   
The eye problem "scare" isn't really all it's ramped up to be. It was more true in the past when the basic component of the med was less refined. Everything I have read in the last nine years (that's how long I've taken it) lead to it being a *small* percentage (like single digits) of happening, and that once a year tests are adequate. You can check more often yourself using the web site indicated in the "resources" thread at the top of the forum. And, once you notice damage, you stop taking it immediately and the damage reverses itself.

So -- risk is small, once a year precautionary eye exam, reversible damage if at all.

As for the "seems to help" -- it is known to be a "disease suppressant" for lupus -- that's how it's listed in the doctor manuals. It's helped immensely with the overall fatigue I've felt, and helped control a variety of other symptoms -- but I have systemic rather than discoid. I think that without it the disease would be much more actively progressive....not my idea of a good time. Jennifer has good ideas about how to keep the cost down.

I would suggest talking with your doctor before stopping it.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

Regular Member

Date Joined Oct 2005
Total Posts : 130
   Posted 3/30/2009 3:56 AM (GMT -6)   
I am sorry that Plaquenil doesn't seem to be helping you enough but the antimalarials bring so many remarkable benefits it would be a great mistake to stop unless absolutely clinically necessary. It IS known how they work see Chapter 59 of Dubois LE the medical text book on lupus, which might be available online. There are a number of important mechanisms by which they modulate disease activity: one is to raise the Ph balance of the cells so fewer antibodies are produced. Another important mechanism is that they absorb UV rays. Flares are reduced and disease progression and worsening most likely inhibited

Apart from the obviously beneficial effects on certain symptoms such as skin and joints and fatigue, the antimalarials bring many hidden benefits such as slight blood thinning, reducing cholesterol, reducing the risk of diabetes, reducing osteoporosis.

The risk of eye damage is reckoned to be under 3% after 10 years of continuous use and is always reversible if no more than the maximum recommended dose has been used ( 6.5mgs per kilo, or 3 mgs per pound, of ideal body weight and patient not in kidney failure)
(DuBois p1164) American doctors recommend twice a year assuming everybody can afford it but once a year should be fine and some countries don't bother at all, although it seems to me well worth the expense for the reassurance. It's a good idea to get a baseline eye check to make sure there is no reason for not taking Plaquenil at all

However it sounds as if the Plaquenil might not be quite enough for you if new lesions are starting. The next drug to be added would usually be Quinacrine another antimalarial that works remarkably well with Plaquenil or chloroquine. Presumably you are avoiding sun and other UV exposure as much as possible, using a broad spectrum sunscreen all year round and applying often enough and sufficiently as well as using all other ways of protecting yourself such as broad brimmed hats umbrellas and so on. Quinacrine doesn't affect the eyes. You might be able to fine tune the dosages so you are taking less Plaquenil and the Quinacrine just a few times a week

All the best

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 3/30/2009 10:46 PM (GMT -6)   
For me plaq is a godsend. It reduces fatigue, overall malaise and random fevers. My overall level of functioning is greatly improved by it.

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 3/31/2009 8:41 AM (GMT -6)   

I took plaquenil for over a year, and I never thought that it did much for me at all.  I have since stopped taking it and have moved onto enbrel and methotrexate for RA.  They  help the arthritis greatly.  But I have other symptoms that are troublesome, primarily muscle soreness across shoulders and hips, extreme cold intolerance, and troublesome raynaud's.  Wondering if plaquenil will help those sx at all.

Others have told me they didn't realize plaquenil was doing anything until they stopped taking it.  I also understand the risk of eye disease is rare with this drug, especially at the doses a lupoid would take it at.



Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 3/31/2009 8:58 AM (GMT -6)   

This brings up the importance of having good communication with your doctor. It's essential that I understand what I'm taking and why. My rheumy explained to me that plaquenil helps slow down the progression of my disease, so while I may not feel the effects of taking it, it is doing my body good.

I agree with Lynnwood -- never stop taking a med without first discussing it with your doctor.

Good luck,

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

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