View Full Version : New to plaquenil....please help :)

11-07-2012, 10:44 PM
My rheumy recently prescribed Plaquenil to me and I'm more than a little hesitant to actually start taking it. I've read the literature he gave me and spoken to someone I know that's been taking it for a while.....however, she's so scared of Plaquenil's side effects that she doesn't quite seem to get what exactly I'm asking her, lol, and I have to admit that after reading the pamphlet I can understand why.

I suppose what I'd like to know....from those who have taken it for a while....DOES IT WORK and WHAT SORT OF SIDE EFFECTS HAVE YA'LL EXPERIENCED? Also, in your experience, has it aleviated your symptoms....and what sort of symptoms has it really helped to aleviate?

I know that each person's experience and/or reaction may be quite different, however I'm hoping that most folk's reactions/experiences will be close enough so that I can at least be somewhat prepared once I get over being a big chicken and actually start taking it.

Any input is much appreciated!!!



11-08-2012, 07:05 AM
for me plaquenil is very good.

i take it in the morning, and then eat straight away.
not in 2 or so minutes, straight away.

this helps reduce the side effect of it making me feel ill.

plaquenil reduces all of my aches and pains.
it also has reduced the effect lupus has on my bloods, (the scariest thing lupus does to me).
i have been able to reduce my methotrexate because plaquenil is working so effectively.

when you read the list of side effects, please remember.
that, by law,every problem that someone ecperienced when testing plaquenil has to be listed.
this means if somebody got a blood nose during the trial period, it is mentioned.....
even if the blood nose was probably caused by something else.

also the list of side effects is for all dosages.
plaquenil is also used as a maleria medication.
the doses are much, much stronger, and the side effects more severe.
the dosages we take are relativelly safe from the serious side effects.

also to help you understand how plaquenil works in your body.
it is a desease modifying drug.
that means it creates a chemical reaction within you.
this reaction creates the side effects, as your body becomes accustomed to the reaction....
the side effects do become less noticable.

adding food to your stomach, straight after taking plaquenil helps because it gives your stomach acids something else to attack, instead of just plaquenil. it does not reduce the effect of plaquenil, just reduces the effect of the stomacks reaction to it.

please see your doctor for more advise on plaquenil.
all of my knowledge has come from my doctor and rhuemy.
i ask lots of questions, because it is my body i am poisoning, not theres.

yes plaquenil is a poison, it is a chemical poison that helps reduce our immune system.
but i use it every day, because it is better than letting my lupus attack me unchecked.

11-08-2012, 07:16 AM
Hey, Chelle! Good questions. So, Plaquenil is the "littlest gun" in the rheumatologists' arsenal. The drug was originally developed as a treatment for malaria, and someone somewhere noticed that people who had lupus but were taking the anti-malarial started to get better. Doctors aren't quite sure how it works, but the going theory is that it interferes with the immune system's communication, thus quieting autoimmune disease.

Does it work? Absolutely! Plaquenil is the first-line defense in many autoimmune diseases, including lupus, precisely because it works and has comparatively few side-effects (compared to other disease-modifying drugs). The hard part for a lot of people who take Plaquenil is that it takes time to work -- up to four or five months -- so you have to be patient. It took me about three months to really notice that it was working, but I could really tell how great it was when I had to stop it briefly. Within a couple of weeks I was in pain and covered in a rash-- a rash that Plaquenil had cleared up 100%

Which brings up a good point: When you start Plaquenil, you have to take it every day to get its benefits. Stopping can be dangerous, so never stop unless under a doctor's supervision.

What kind of side-effects? Very few! At this point, Plaquenil for me is like taking my morning thyroid pill: a habit that doesn't change my day at all. Many people -- me included -- experienced stomach pain for about a week after starting the drug. My best advice is just to suck it up and get through the pain if you experience it. Taking the drug with a meal helps, as does splitting the dose into two doses a day. If the stomach pain continues for more than a week, see your doctor.

But what about the scary side-effects I read about? Drug inserts have to list EVERYTHING people have experienced while taking the drug, so some of the stuff is really scary. I don't know which side-effects disturbed you the most, but two notable side-effects that have come up from taking Plaquenil are aplastic anemia and retinal deposits affecting vision. Both of these are RARE, especially if you take the proper dose of the drug for your height (see this post for a discussion of proper dosing: http://forum.wehavelupus.com/showthread.php?12018-Plaquenil-for-Short-People-(Newer-Dosing-Guidelines-from-Ophthalmologists)

When you start taking Plaquenil, you should see a medical ophthalmologist (if you live in a city big enough to give you some choice, pick one who has done Plaquenil eye exams and worked with people with lupus or other autoimmune disease), who will give you a "baseline" eye exam, then you go back every year for a check-up. If you follow this routine, it is very likely you would catch any problems before they become a big problem. Also, as my ophthalmologist told me -- and she was trained at a big medical center that saw tons of autoimmune disease and she did Plaquenil eye exams "ten times a day" some days -- said in the hundreds of exams she'd done, she only saw two cases of (mild) eye problems from Plaquenil, and they were both in people taking high doses for over ten years.

I have done a lot of research and talked to a number of doctors, and my opinion is that Plaquenil is a relatively safe drug that carries a very high likelihood of helping control autoimmune disease.

The bottom line is, whatever chance of side-effects that come with Plaquenil, there is a MUCH higher likelihood that it will be of considerable help to controlling your disease. And without Plaquenil, you definitely increase your chances at getting work-- it is a fantastic drug for controlling flares. If your rheumatologist thinks you should take it, I definitely would. If you have any specific questions, I'd be happy to do my best to answer them.

11-08-2012, 08:36 AM
It works great for me and bothers my stomach less than my morning multivitamin :-P
I always take it on a full stomach, and remember to NEVER take it within 4 hours of taking a calcium supplement or an antacid, or it won't be absorbed properly by your body.
It really is a mild drug - probably safer than half the stuff you can buy over-the-counter!

11-08-2012, 03:20 PM
For me, it has been fantastic, compared to what I was experiencing. It took right at 3 weeks for me to notice a change in the "pain", and a reduction in the swollen joints. It has also helped in reducing my skin "issues", though they aren't eliminated as of yet (if they ever do). As the plaq built-up in me, I experienced some "gas" (but with me, what's the diff between gas from plaq, and "naturally" occurring gas in me??), but that did decrease as I used it. I have to take it after eating, else I do get a belly ache. Initially, I had a reduced appetite, but that's back up over and above previous. Initially, I experienced some rather weird, vivid dreams, bordering on macabre, but I quit taking it in the evening, and moved the 2nd half of my dose (2x200) to just after lunch. End of most of the weird dreams. My rheumy (yours may say differently) and my opthamologist both have said that it's at least 7 to 10 years before folks would experience any of the retinal issues, and at that, a lot of folks experience none. It is a really good idea to get the retinal scan at an opthamologist's prior to starting the med. Then get another each year for follow-up, and they can compare them year to year. Some folks get 'em once every 6 months. They are *extremely* boring to do... For me, the one 'bad' thing is if you have MG, or some other myasthenic type issues, the plaq will aggravate those...

11-08-2012, 10:54 PM
Although there are some people that have problems with it they are a very small percentage of people and it is usually stomach issues. As was said above, plaquenil is one of the safest drugs out there for us. Although you may see a a bit of progress relatively soon ( a few weeks) for most people it takes several months to get the full benefit of this drug. It is one of those things that kind of sneak up on you. One day you notice that you haven't had those nose blisters in awhile or that you have been rash free for a long time. Don't be scared of it. It is much better than the other options and that is the reason that it is one of the first drugs the doctors use.

11-09-2012, 05:34 AM
Hi Chelle,

I've been on Plaquenil almost constantly since 2004. I take 400mg a day. In all the years I've been on it, I haven't experienced any bad side effects.

The plaq keeps my overall symptoms in control and thus the disease activity from gaining a foothold and going out of control. The one time I attempted to stop plaq, I got extremely sick, and my ANA and other various test numbers went from OK to terrible in very short order, so yes, the stuff definitely works.

Nobody knows exactly the how and why of what makes an anti-malarial drug work for people with Lupus, but there's no doubt that it's a safe and beneficial cornerstone medication for us.


11-09-2012, 08:30 AM
I almost mentioned this in my last post and since Rob brought it up I am going to do it now. I came off of plaquinel once, I think it was almost 2 years ago but my short term memory is shot as is my sense of time so it could be more or a little less. I did it in a stupid way for a stupid reason but that is for another thread. For this thread I will simply say that I had no idea how well it was working until I came off of it. Although I have been out back on it and it has helped A LOT, they have yet to get my disease back to the place it was before.

People wonder why I am such a strong proponent of this medication and it is simply because I have seen first hand the difference it can make and what this disease can do when let run amuck. Don't be scared. I too never had any side effects but I promise I had tons when the disease was allowed to go without it

11-09-2012, 09:08 AM
Oh yeah - I forgot about the dreams! I definitely had some weird, extremely vivid dreams for a while when I started taking it, but they died down pretty quick - like within a few weeks. Doesn't happen now.

11-09-2012, 03:50 PM
... I will simply say that I had no idea how well it was working until I came off of it...

Same here. Had to quit for a couple months after my "reaction" back in July. I did *not* do well without it, and after starting my thyroid stuff back up, the plaquenil was next. I sure had missed its help...

11-09-2012, 11:09 PM
I've been taking it since 2008, and my experience has been much like everyone else here. I had a few problems the first couple of weeks, mostly a cramping stomach and "the trots". Once my body got used to it, I haven't had a single problem with it.
I get my eyes checked every six months, and I have a great ophthalmologist, so I do just fine.