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Posted 11/14/2006 1:08 PM (GMT 0)
Are many of you taking plaquenil?  Does it do anything for you at all?  I've been taking it for about 6 months now, and I can't tell that it's done a thing.  Arthritis is a bit better, but I also take enbrel, and have recently added mtx, so that confounds it a bit.  I think I may be overmedicated and was thinking about dropping the plaquenil if there was no benefit to it.  Just wanted everyone else's opinion on it.

Thanks,

Elcamino

Posted 11/14/2006 5:24 PM (GMT 0)

Hi Elcamino,

I have been taking Plaquenil (400 mg per day) for about 2 years now due to lupus flare. When i first started it, I was also started on prednisone to get my inflammation under control. Actually I started on 200 mg per day and about 2 months before tapering off pred, he upped me to 400 mg per day of plaquenil to give it plenty of time to kick in. I was told it helps to minimize the progression of the arthritis and helps to lessen flare ups. It also helps with rashes & i've noticed mine hasn't been so bad.  Also, though it could just be coincidence for myself, it seems since I've been on it...i've not had trouble with cut healing and had less infections (cold, no flus, hardly any sinus infections). It can affect the eyes if taken long term but so far, I've had no problems. I also noticed my flare-ups havent been as bad as they were & lasted much less time.(except every time I tapered the pred, I flared up, but only about 2 weeks maximum). I also havent had excessive hair loss this whole time. I have thought before if it really does anything or not..but I'm scared to think of what might happen if or when I do stop taking it <eeeks>.

Posted 11/14/2006 10:03 PM (GMT 0)
Hi Elcamino,

 

I just started it last Friday and I am taking 400mg daily.  I was told it could take several months before I see a difference, which was a bit discouraging, however, I am hopeful it will at some point. 

 

By the way, what is Enbrel? I hear people hear talk about so many different medications, and my doctor is so conservative with the meds, a year later and I finally got a prescription for the plaquenil :)  I only take one at a time so I can usually tell if it is going to work or not.

 

 

 

 

Posted 11/15/2006 1:34 AM (GMT 0)
Enbrel is one of the biologics, the class of drugs known as tnf-inhibitors. It is one of the DMARDs used for inflammatory arthritis, but it is a second line drug (I believe). NSAIDS are usually the first line of drugs tried. The biologics are wonder drugs for many people, but a lot of people also find great relief with just plaquenil. Someone else told me that plaquenil could take up to a year to work!!!! Others have told me that it only took a few months for them to feel the effects. Everyone is different. I can tell you that plaquenil is the safest of all of the DMARDs. If you're going to stay on a DMARD for a long time, plaquenil is the one to be on. Best of luck on the plaquenil. I've decided I'm not going to play around with it until I feel my arthritis is better controlled with the enbrel and mtx. Lupians, from the lupus forum, warned me of plaquenil withdrawl, which I guess leads to rebound arthritis, a particularly severe form that occurs when coming down off one of the DMARDs, or even off of prednisone for that matter.

Elcamino
Posted 11/17/2006 2:39 AM (GMT 0)
I'm as well on Plaquenil have been for nine months and and so fare I am doing ok on it had my eye's checked last month and it has effected my eyes some what had to have stronger glasses but other than that I'm doing fine on it.
Posted 11/19/2006 5:25 AM (GMT 0)
I love plaquenil. I would marry it if it was legal to do so. Took me 'bout nine months or so before I noticed it doing anything. Mostly I find it helps for fatigue rather than joint pain (for me anywho). This time round I've been on it for almost 2 years and wouldn't give it up. I tried it once before for 3 or 4 months and gave up cause it wasn't doing anything. I'd recommend that you stick with it for at least a year before you decide one way or another. It kinda sucked for me to try it for a few months and then just have my rheumy put me back on it after I had stopped for 6 months. If you do decide to cut it out, half your dose for awhile first to see if you get worse then if not half it again. 'Course insert the usual disclaimer 'bout I'm not a doctor, or a pharmacist, or a rocket scientist etc. etc.

For me, it's worth taking just for the malaria protection alone. I'm in Northern Ontario, Canada and the end of November is totally malaria season here. Okay, I made that up. Cheers!
Posted 11/19/2006 7:20 AM (GMT 0)
Hi Elcamino,

I love plaquenil too and just hit the sixth month mark (400mg a day). It took about 3 months for me to notice anything, but seems to get better and better the longer I'm on it. Still getting the flares, but they don't seem to be as severe as they were now. I hope you find some relief.



Kimber
Posted 11/19/2006 4:17 PM (GMT 0)

Hey El,

I've been on it for about 19 months now - 200mg 2xa day. For me, it has been awesome and one of the few drugs that actually helps! about a year ago (8 months in) I wasn't convinced it was the plaquenil that was helping (thought maybe I was sans-flare), so, I stopped taking it to test it out.  Sure enough, I started having problems. I tried it again another 6 months later and once due to the stomach flu. Both times resulted in a painful flare. I can handle 1/2 dose for a few day if necessary, but can't let that go too long. No dose, less than a week I'm regretting it.

Don't know if I'd marry Plaquenil like Dave  tongue  (you're too funny!), but I'd be literally devastated if I ever have to stop taking it or it stopped working.  Hmmm, maybe I would marry it....not sure my husband would like that though...sharing a bed with a giant pill bottle.

****

Posted 11/20/2006 1:18 AM (GMT 0)
Hi Elcamino,

I'm on month 5 of Plaquenil and really started to notice it working last month. It's super subtle, but since it's all I'm on (aside from Relafen), I can tell that each gradual improvement has to be the Plaquenil. I went from popping knees and aching ankles on Relafen alone to now "bounding" up stairs occassionally and walking through the mall without having crippling knee and ankle pain/swelling afterwards. Yeah Plaquenil!

Me and Plaquenil are only engaged right now. tongue
Posted 11/20/2006 2:44 AM (GMT 0)
Wow, it's great to hear so many success stories. Yeah, Dave, malaria up in Northern Ontario is a real killer. Better be safe than sorry :)

I'm not planning on doing anything with the plaquenil right now, not until I've talked to my rheumy and not while I'm still flaring. Rocky, now that you bring it up, I guess I used to cringe when I stood on my hips and I'm no longer doing that. Is it the plaquenil? Is it the enbrel? Is it both?

I just feel overmedicated sometimes, and I'm sure I'm a lightweight compared to some of you guys!

Thanks all for sharing!

Elcamino
Posted 11/20/2006 4:49 AM (GMT 0)
Good term, Rocky, "super subtle" that does pretty much sum it up....that's why I decided to 'test' it and stop taking it periodicially. I'm convinced now and stay on dose as best I can! 

Long as it keeps working, I'm a happy camper!

***

Posted 11/22/2006 11:29 PM (GMT 0)
oh God i feel left out.  darn...i would have an affair with plaquenil if given the chance.

butt my GI doc insists i remain devoted to Imuran.  and that too, i do believe, takes like a year to work properly as it builds up a level. 

 

since speaking of my lovely GI doc, i felt compelled to use "butt"....very appropriate.

 

Dave, you're the best.

Posted Yesterday 2:07 AM (GMT 0)
I've been on placquenel for about 13 years.   It worked extremely well for me for a long time.   I wasn't taking anything else.  There was a little regression but nothing that stopped me from doing most of the things I wanted to do.   A couple of years ago I went through menopause and things went downhill.   I finally started taking Humira.  It worked like a miracle for a couple of months and my rheumatologist told me to get off Placquenel.   I personally thought it wasn't doing anything for me anyway.  By the fourth month after going off of it, I got the worst flares of my life, even with the Humira.   The doctor was going to put me a few other drugs along with the Humira.   I asked him one question, "How long does it take for the placquenel to leave the system?"   He said about 3 to 4 months.  So I told him I wanted to start the Placquenel again and within a month I was doing much better, without taking any other drugs, except the Humira.  You may think the placquenel isn't doing anything, but it might be helping you more than you know.   Placquenel is really easy to take, especially when compared to the other drugs.   I've been taking it a long time with no bad side effects at all.   I have found that 200 mg's work fine, and when I raise the dosage to 400 mgs, I do not find any difference.   200 mgs are a lot safer on the eyes, so if you want to be less medicated, it may not be a good idea to get off the placquenel but take the lower dosage.

Brenda

Posted Yesterday 6:29 PM (GMT 0)
thaks Brenda for sharing, that was great. we needs folks that have had a long history with a med. WELCOME TO HEALINGWELL! for what do you take plaquenil for? glad to meet you.
sincerely,
erin
Posted Today 2:47 AM (GMT 0)

My rhuemy told me yesterday that they don't Rx Plaquenil as much because it doesn't seem to work as well for many people. He was quite impressed at how well it works for me....I wonder if his experience is with people who don't recognize the subtlty of what it is doing for them.

I found it strange, since there does seem to be quite a few people here who it works for on HW.

*****

Posted 12/3/2006 1:00 PM (GMT 0)
Hey camama, I too wonder if it's doing anything for me, but haven't even addressed going off of it with rheumy. I figure it's the least harmful of everything I take, so not sure if I want to go off. At least now, like Dave, I won't get malaria!

I suspect that if I went off of it, I would feel worse.

Elcamino
Posted 12/3/2006 8:40 PM (GMT 0)
you would feel worse...or get Malaria.
LOL
Posted 12/4/2006 6:25 AM (GMT 0)

Well, I guess you are right....as rotten as I feel, I can rest assured I don't have malaria!

tongue
Posted 8/14/2008 9:41 PM (GMT 0)
I am very BLUE! I have been taking Plaquenil for 8 months with Prednisone and Lyrica for Lupus/Fibro. I stoped the plaq becuase I did not think it was been helping, stupid me! I am in so much pain, fevers, chills, my acid reflux has burned my larynx and I cannot get out of bed. Stay on the plaq and give it chance to work, it does in time. I found out the hard way!

Janice
Posted 8/15/2008 12:03 AM (GMT 0)
I have been on plaquenil for 8 months and have lost 60 pounds from it (this is a good thing) also the fatigue is completely gone as is the morning stiffness. Plaq did not do enough to end my flare and get me off pred so doc convinced me to add MTX.
She tried to take me off the plaq at my last appointment and I would NOT let her.
She says she leaves her lupus patients on it forever unless she has to take them off but generally takes her RA patients off if they are on other meds and doing well.
Sj
Posted 8/15/2008 2:16 PM (GMT 0)
I have been taking plaquenil for a long time now and ran out last week and thought it would be okay now that I am on the Enbrel..WRONG!! I went 7 days without and my fatigue came back and my hips were starting to get that burning sensation..I was beginning to go downhill in a hurry.  It looks like I can't get by without the plaquenil even with the Enbrel.  I really like the plaquenil and I'm a firm believer that it does keep the fatigue and inflammation at bay..at least for me it does! I'm terribly tired without out it.
Posted 8/15/2008 6:23 PM (GMT 0)
Hi Elcamino,

I've been on Plaquenil since 2004. It has worked very well for my fatigue and joint pain. However I didn't realize how well it was working on my joint pain until my rheumy tried to take me off it twice. I am also on Imuran & MTX and still have joint pain shocked

I hope you start feeling better soon! Take care
Posted 8/15/2008 11:55 PM (GMT 0)
My rheumy took me off plaquenil once he got me successfully off the prednisone. He said that now that I am on MTX, I no longer need the other 2 meds.
Reading all your posts here has me wondering if this is the reason I have such a hate/hate relationship with MTX...maybe all my stomache woes were not because of that, but because of the withdrawl from plaquenil, I was on it for 11 yrs, then he said..no more plaquinal :-(( I have sooooooo much trouble now with my stomache, but have been blaming it all on the MTX. My joints are ok even though I'm off it, but this digestive upset is really getting me down :((
Posted 8/20/2008 3:33 AM (GMT 0)
Why did he make you stop the plaquenil after 11 years?

Posted 8/20/2008 1:29 PM (GMT 0)

I have been off of plaquenil successfully for the past 6 months or so.  I don't even miss it.  I guess I was right when I felt it wasn't really doing anything for me.  Rheumy, when he put me on it, did say it was one of the milder DMARDs, but his lupus patients all take it.  I don't have lupus, but my arthritis is distinctly lupus-like.  But since enbrel and mtx, I have had few problems. 

Oh well, I guess I need to worry about getting malaria now :)

El

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