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Old 06-29-2012, 08:56 PM   #1
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plaquenil questions :)

Hello
I am wondering if anyone here uses plaquenil and likes it? I am currently on Humira, Mtx, Prednisone, Sulfalizine and other pain meds... I have been especially achy this past month for some reason?? I guess I have a cross between Lupus and RA. (ANA positive for 5 years now) I am RA negitive... but knees, ankle and shoulder are always inflamed... Butterfly rash sometimes on cheeks and joints ache throughout the day especially in the pm. Rhumy. suggested I try Plaquenil. Any advise would be awesome Thanks

 
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Old 07-03-2012, 02:33 PM   #2
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Re: plaquenil questions :)

Hi there,

I have been on plaquenil for about 6-8 months. It takes a long time to kick in (3 mos to start feelingthe effects with full effects at 6 months). I have similar kinds of issues. High ana, joint inflammation, fatique, etc. For me, the plaquenil helped but didn't completely do the trick so I will likely be starting methotrexate sometime soon.

I did have some sort of reaction to it when I first took it, I kind of wigged out, but that only lasted for a day and then I was fine. I don't think that's common and it may have just been me freaking out over the whole thing.

The only really concerning side effect is that it can affect your eyesight when taking large doses (greater than what we take for Autoimmune disease) over long periods of time. That said, most doctors recommend regualr eye checks. If the drug does affect eyesight, then you have to stop taking it. That is a very rare occurrence so nothing really to be concerned about. Anyway, I hope this helped. MJ

Last edited by heymj; 07-03-2012 at 02:35 PM.

 
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Old 07-04-2012, 04:30 AM   #3
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Re: plaquenil questions :)

Whatishappening, hi. I've done well on Plaquenil plus daily OTC (Advil). Plaquenil alone doesn't control my pain enough, so I need the Advil, too.

Plaquenil is commonly prescribed on top of other lupus meds because it can be steroid-sparing. I see you take multiple meds (Humira, Methotrexate, Prednisone, Sulfazine). Does your dr. hope to pull you off some of those &/or reduce the dosages?

Are you "allowed" to take OTC's (meaning do they mix with what you're on, and assuming you have no other medical concerns that would prevent your taking them)?

Like MJ wrote, I worried about eye toxicity (melanin buildup on retina) but stopped worrying after I read what one expert wrote in his hardcover. if buildup occurs (and it's rare), the buildup almost always reverses when the drug is discontinued.

I've taken it > 12 years without problems. At first, I had some nausea and saw a halo around lights at night, but both passed quickly. Let us know how you're doing. Wishing you luck with whatever you decide, bye, Vee

 
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Old 07-04-2012, 05:12 AM   #4
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Re: plaquenil questions :)

Dear "what", this is a P.S. to what I posted earlier about the drugs you're already taking. Have you ever run them through an online drug interaction checker, or asked your pharmacist to do that for you? In your shoes, I'd check what I was on now, then do another iteration to factor in Plaquenil.

But I only think this way because I've known people whose doctors were good at adding drugs but never subtracting (my mother and MIL were classic examples). ALL THAT SAID, no online tool or pharmacy software program supplants your doctor's advice---he's the expert. Best wishes, Vee

 
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Old 07-04-2012, 05:53 AM   #5
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Re: plaquenil questions :)

Thank you girls for your advise. I will talk to my Dr. next week and ask him about the meds. I am currently on 10 mgs. of Prednisone a week and hoping I can cut down my dosage. ( which is really hard to do, have tried it in the past and didn't have success...) Thanks again! Have a great day.

 
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Old 07-07-2012, 12:45 AM   #6
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Re: plaquenil questions :)

Quote:
Originally Posted by whatishappening View Post
Hello
I am wondering if anyone here uses plaquenil and likes it? I am currently on Humira, Mtx, Prednisone, Sulfalizine and other pain meds... I have been especially achy this past month for some reason?? I guess I have a cross between Lupus and RA. (ANA positive for 5 years now) I am RA negitive... but knees, ankle and shoulder are always inflamed... Butterfly rash sometimes on cheeks and joints ache throughout the day especially in the pm. Rhumy. suggested I try Plaquenil. Any advise would be awesome Thanks
I've had no side effects from Plaquenil & I have been taking it for a couple of years now. It's the only reason I can stay out of bed. No it's not all that helpful for the pain, but it helps with the fatigue and it stopped my muscle weakness. I could not live without this medication. I would be bedridden.

Last edited by neveragain444; 07-07-2012 at 12:58 AM.

 
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Old 07-23-2012, 05:57 AM   #7
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Re: plaquenil questions :)

Plaquenil really helped me, however the past month I have been really achey too...must be the weather

 
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Old 07-26-2012, 07:17 AM   #8
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Re: plaquenil questions :)

Hey
I have been on Plaquenil for 20months now and it did help with joint pain (mainly finger and toe pain!) but it also got rid of the rash I had on my finger and knuckle joints. The two draw-backs are possible eye damage with long-term use but I get my eyes checked regularly and no deterioration as yet, and hair loss. I am on a rather large cocktail of drugs so it's hard to really know what causes what; but when my hair started to really fall out, my Rheumatologist halved my Plaquenil dose to 200mg the hair loss slowed down. I think it's worth trialling it, good luck xxx

 
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Old 07-26-2012, 08:19 AM   #9
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Re: plaquenil questions :)

I have been on Placquenil for almost 20 years for combo SLE/RA. It has worked well for me with no side effects whatsoever. I suggest taking one pill a day for a week or so before going to the full dose to see if it is going to be a problem in any way. It's effect occurs so slowly it is sometimes hard to tell if it is helping. I once went off it because I thought it wasn't, and within 3 weeks, I was MISERABLE. So it definitely helps me. It can make you more sun sensitive, so just be extra cautious to avoid sun exposure.

 
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Old 08-12-2012, 07:32 AM   #10
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Re: plaquenil questions :)

I was taking plaquenil (hydroxycholorquine) but I never could tell that it was doing any good. My doc told me to stop taking it and gave me a script for Tramadol, which doesn't seem to do much for the pain either. I'm on 20 mg of prednisone a day which kinda helps with the itching.

 
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