Ever go off plaquenil?

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 6/4/2008 2:55 PM (GMT -7)   
Rheumy took me off plaq. Last month. I was ok for 2 weeks. Now I am so tired I can barely get out of bed or off the couch or even make me a sandwhich. I know it's good for joint pain but I was wondering if anyone has stopped taking it and gotten extremely fatigued?
Desperate for answers
carol
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/4/2008 3:27 PM (GMT -7)   
Plaquenil helps with the fatigue without us realizing it so when we go off we experience the fatigue we had before it and are floored by it.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/4/2008 3:32 PM (GMT -7)   
Thanks Redrose, It didn't really occur to me until today that it could be the reason I am not getting better. I just thought i was sick. I don't understand why the rheumy took me off of it. and he is only in the area once a month. I told my regular doctor that he took me off of it and she said I could give it a try. Well I tried. I feel like crap! So I took it today. I wonder if that means anything that it makes me tired without it? Since i havn't been DX'd with anything?
I hope you and baby are doing well
love ya
carol
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 6/4/2008 4:02 PM (GMT -7)   
I did that a few years ago...I thought that I was doing really well. I went for a couple of months, than all He** . I crashed like a ton of bricks, I also counld not move. I hope you ca get Well soon. Yes, I am back on it.
PLAQUENIL, FLEXERIL, CELEBREX, CYMBALTA, BENICAR, ALLEGA, SINGULAIR, PROSCAR, LEVITRA, METROGEL, PORTONIX, NASACORT, CALTRATE-D, CENTRUM AND CREAMS
Enjoy what you can today and leave the rest for another day.
 
Frank
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/4/2008 4:10 PM (GMT -7)   

Thanks Frank, Yeah your right it is pure H*ll. and I'm moving in two days. I'm not even gonna be able to help move things. Did it take a long time before the plaq. started working again?

hugs

carol


God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/4/2008 4:21 PM (GMT -7)   
Carol, oh yes!!!! My fatigue is the first thing I noticed an improvement when I started Plaq and it's the first thing I noticed coming back the 2 times my rheumy has wanted me to come off of it. It took about 2 weeks and I was in a terrible flare, it was a lot worse this last time I was having a lot of muscle problems too in addition to increased joint pain. It took about a week to start feeling better once going back on the Plaq. I sure hope you start feeling better soon!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/4/2008 4:54 PM (GMT -7)   
It may take a few weeks depending on how much has worked its way out of your system. It takes so long to work in the first place because it has to build up. Heck if I miss 2 days I notice a difference. Some people can miss a few weeks, it just depends on the person and their body.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/4/2008 6:33 PM (GMT -7)   
Carol, I was worried about things when you said your doc wanted you to stop the plaquenil. Like the others said, plaquenil can help with fatigue in addition to joint pain, so that could very well be why you are so worn out. I'm glad you started taking it again and hope that it doesn't take long for it to get back in your system.

Hang in there and I hope you get some energy back soon. (((((((Hugs)))))))
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; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/4/2008 7:09 PM (GMT -7)   
Thanks for all the help everyone. I guess I was watching for swelling, inflamation or some soreness. It just didn't click that this what I would have to call." Debilitating fatigue" would be caused from stopping the plaq. That's the last time I'll let a doctor talk me into stopping the stuff. I just really hope it doesn't take 6 months again to feel the benefits.
hugs
carol
God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 6/5/2008 9:54 AM (GMT -7)   
I took myself off of it last year due to stomach issues. It took me a while to figure out that the reason I was feeling like crap again all the time was because I did that. (Yeah, I blame lupus brain fog for my slow thinking! LOL)

Now I'm back on it, just 200mg a day because I'm still not brave enough to go up to the recommended 400 mg dosage. It's only been a couple of weeks and I don't feel any better, really. But in retrospect, I realize that my long flare-free time last spring and summer was probably due to the plaquenil. I'll be glad when it builds up...and I won't take myself off it again.

Hope you are able to go back on it soon and/or figure out why he took you off in the first place!
Kari
Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain


Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 6/5/2008 1:00 PM (GMT -7)   
I've never been off of it, been taking it for over 2 years. Sounds like it will be a lifelong deal unless there's a cure. I feel very fortunate to not have any symptoms that I can directly attribute to the plaquenil. I wonder why the doctor took you off, that's very interesting.

edit - wow my signature is all weird confused It left out MCTD, Fibromyalgia and such.....oh well, off to the control panel I go lol

Polycystic Kidney Disease, Diagnosed January 2006




<FONT color=red>Plaquenil 400mg, Methotrexate .8 CC injections, Folic Acid, Prednisone (off and on), Lexapro, Cardizem 360 and Diovan 80 mg (to control high BP related to PKD)....oh yeah, and Nasonex too for allergies. Lyrica (prescribed for Fibro).


<FONT color=#0000ff>


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 6/5/2008 3:51 PM (GMT -7)   
No, it didn't take long for me. I felt alot better.
PLAQUENIL, FLEXERIL, CELEBREX, CYMBALTA, BENICAR, ALLEGA, SINGULAIR, PROSCAR, LEVITRA, METROGEL, PORTONIX, NASACORT, CALTRATE-D, CENTRUM AND CREAMS
Enjoy what you can today and leave the rest for another day.
 
Frank
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/5/2008 4:20 PM (GMT -7)   

Hi Stones, yeah I was looking at your post and it said it was your first post but you joined in 06. I'm assuming that's weird too huh? confused

hugs

carol


God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


garnet
New Member


Date Joined May 2008
Total Posts : 2
   Posted 6/5/2008 7:44 PM (GMT -7)   
I guess, mine is different. I can tell the difference when I am still taking the plaquenil. It hurts my stomach so badly and I got headache everyday tho it really helps the joints and muscles. It's been a month that I dont took plaquenil so far I dont feel difference, no stiffness and pain in the joints. No more stomach sour feeling. Lesser headache.  The only thing I am noticing is the fatigue but I was thinking maybe bec. I did my gardening these past days....But everyone is different.
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