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Plaquenil Poll

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Posted 5/18/2007 12:37 PM (GMT 0)
I've been reading through some of the posts and have found several references to Plaquenil helping with pain.

I took Plaquenil for about two years and never could tell any difference whatsoever in my pain level.

I would love to know if I'm just "wired differently"...

Does Plaquenil help with your pain?

Thanks!

Lisa

Posted 5/18/2007 3:01 PM (GMT 0)
I believe Plaquenil helps control my overall mild to moderate (1-4 on 10 pt scale) muscle/joint pain. Of course, it was prescribed at the beginning of my treatment in 2000 and I have never come off of it. (Except for those 2-3 days when I subconsciously rebel and 'forget' to take my meds!) It's been my observation, both from my own body and from reading the forum for quite a while, that it helps suppress the initial inflammations, but once you've passed that into actual PAIN levels it probably won't help. It isn't a pain medication, it's primary purpose is to control the actual hyper-immune activity of Lupus. I also am fairly certain that it is a "stealth" med -- it really is doing something, but we don't know for sure that it is unless we go off it a couple weeks and experience negative changes. Unfortunitly, it seems to trigger flares in people that try to go off it, and it may take several months to recover from that 2-3 week break. Not worth taking the chance, in m personal opinion. Hopefully others that have tried to go off plaquenil will come along shortly to offer their personal experiences. Cheers,
Posted 5/18/2007 3:17 PM (GMT 0)
I've been on Plaquenil since January and even though I have never gotten off of it, I sure do notice a difference. It did take a while though. I'm not 100% and don't think I will ever be (just something you have to come to terms with) but it sure helped make my pain more bearable. I seem to have good days where as before I didn't have any. I do get pains that are beyond bearable every once in a while but I do have other meds that take care of that. I have yet to see a change in my fatigue though. Plaquenil is supposed to help but so far nothing. I may still be quite new to the Plaq though and it hasn't had time to completely benefit me. I don't think that I would try going off of it because of all the horror stories I have heard when people do, just as Lynn mentioned. The thing that won me over is that its known to slow the disease progress which in itself if it did nothing for the symptoms would be worth it anyway.
Posted 5/18/2007 3:49 PM (GMT 0)
Des -- You may be thinking of horror stories about going off plaquenil, but the *bad* horror stories are about going off prednisone without dr supervision. Going off prednisone can kill you if you do it too fast. Just wanted to post in case you are getting the two confused -- I know I get 'em mixed up on those foggy lupus days!
Posted 5/18/2007 4:07 PM (GMT 0)
Yeah I have heard both. But yeah Prednisone is definitely not a drug that you want to mess around with. I have been lucky to dodge the Pred but I just got my blood tests back from my Neuro and my ESR is still high. Last time the rheumy said, "Let's see how the Plaquenil does and if your inflammation doesn't go down we are going to have to try something else". I'm scared that "something else" he is referring to is Prednisone. Well my next rheumy appt is in July so lets cross our fingers that it will turn around before then. EEK!!
Posted 5/18/2007 5:47 PM (GMT 0)
Lynnwood's descript ion of plaq being a stealth med is a perfect descript ion. I also agree that it helps control mild lupus symptoms pretty well. I felt best the first year I was on it and responded to it pretty well. I found it helped with both the fatigue and the pain. I still had both they were just less severe. THen as my disease progressed it didn't control things as well and eventually I went on prednisone. My rheumy explained that he does not want me to come off the plaq though because he is worried that I could get pretty sick if I went off of it. I have read from several people here that they stopped it because they didn't think it was doing anything for them and then they went into terrible flares that took a long time to get out of. So I think it does do a lot more than we realize it does. I also like that it has a lot fewer harmful side effects than a lot of other lupus meds. But, everyone is different in how they respond to meds. If you're not sure the plaq is working for you, it's worth talking to your rheumy about and get his/her opinion about it. Take care
Posted 5/19/2007 1:39 AM (GMT 0)
i was taking plaquinal for 10 yrs and in the begining i felt a differnce.ive been off it for 3 weeks now and dont notice a difference.not sure if i will be going back on it.hope that helps you .oh i also have been taking prednisone for 10 yrs also .i havent been able to get off that drug.take care of youself...love marie
Posted 5/19/2007 11:44 PM (GMT 0)
I'm been on it for about 6 months? My pcp put me on 800 a day. two months later my rheumy knocked it down to 400 mil. a day. I immiediately crashed. Than my pcp put me back on 800mil two weeks ago. and I'm feeling much better again. The only problem with that is I don't know anyone that takes that much and I am a little concerned about it. but as far as my energy level is it has helped. and possibly some inflmation hard to tell though because I take pred. and vicodin too.
hugs
carol
Posted 5/19/2007 11:56 PM (GMT 0)
I've been on plaquenil for >10 years. It's never helped with pain, but it definitely reduce any skin lesions (I used to get them all the time) and helps me handle the sun a little better. I've been taking 400 mg / day for nearly 9 years, but also haven't had to take prednisone for ~9 years. (YAY)
Posted 5/20/2007 3:37 AM (GMT 0)
It has helped me alot...I thought I was just Mr cool, because after 2-1/2 yrs, I wasn't feeling any pain. Then after about a yr being off. I hit rock bottom, I couldn't move, legs were so bad that I was out of work for the whole month of April...Had to go back on plaquenil, I will never stop taken it again.
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