Plaquenil Poll

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LisaFCR
Regular Member


Date Joined Oct 2004
Total Posts : 39
   Posted 5/18/2007 5:37 AM (GMT -7)   
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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 5/18/2007 8:01 AM (GMT -7)   
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,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/18/2007 8:17 AM (GMT -7)   
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.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 5/18/2007 8:49 AM (GMT -7)   
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!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/18/2007 9:07 AM (GMT -7)   
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!!
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/18/2007 10:47 AM (GMT -7)   
Lynnwood's description of plaq being a stealth med is a perfect description. 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
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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marie59
Regular Member


Date Joined May 2007
Total Posts : 20
   Posted 5/18/2007 6:39 PM (GMT -7)   
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

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/19/2007 4:44 PM (GMT -7)   
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
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


breneda
Regular Member


Date Joined Apr 2006
Total Posts : 41
   Posted 5/19/2007 4:56 PM (GMT -7)   
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)
Brenda

~.~.~.~.~.~.~.~.~.~.~.~
SLE diagnosed 1992
Peripheral Neuropathy diagnosed 2002/2003
Type II Diabetes diagnosed 2006
Meds: plaquenil, neurontin, relafen, nortryptiline, soma (as needed)


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 5/19/2007 8:37 PM (GMT -7)   
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.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

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