Plaquenil and muscle aches and pains?

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lucysgd
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Date Joined Jun 2008
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   Posted 4/28/2009 12:46 PM (GMT -6)   
I've been taking Plaquenil 400 mg for nearly 6 mos.  I didn't seem to have any problems whatsoever with it initially, other than very short term and mild cramping/diarrhea.  But now I've been dealing with considerable muscle aching and pain/spasm in some new places - or at least places that haven't bothered me in quite awhile.  My knees and legs hurt, back, hips, shoulders, fingers, and now my left heel - which has me limping half the time.  I felt the Plaquenil helped the fatigue, but it seems the pain is sabotaging that effect.  It also stopped my hair loss and soon after starting it, the skin on my face became more normal and less coarse.  I was thrilled.
 
I also have fibro - so have been thinking that it was just a big old fibro flare (2 + mos.)  I felt so bad I saw my GP and he ran tracer labs and deduced it was fibro (no inflammation).  But I just read that generalized muscle aching and pain can be caused by the Plaquenil itself.   I would appreciate any comments or information from those of you who have experience with Plaq side effects.  Would it be strange to be developing these problems 3-4 mos after beginning treatment?   Should I stop it and see what happens?
 
Thanks for all comments.  Hope everyone is having a good day!
Lucy

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Lynnwood
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Date Joined May 2005
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   Posted 4/28/2009 3:06 PM (GMT -6)   
I've been on Plaquenil for over 7 years, and I've never thought that anything was caused by it. Guess I'll have to re-read the side effects and think about my pains in relation to new data.

I'm interested to hear if anyone has been able to relate plaquenil usage to pain.

(I don't think I'd stop the plaquenil without consulting my doctor first.)

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


lucysgd
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   Posted 5/8/2009 11:42 AM (GMT -6)   
Turns out it may have been a side effect of Lipitor.  GP started me on very low dose (10 mg once weekly) which I had been taking for a couple mos.  I stopped it and 3 weeks later this miserable flare/pain etc. is lifting. :-)   I've continued w/ the Plaquenil, so no longer suspect it as a possible cause.  It's also possible that stress and travel alone  just threw me into a bad flare and I'm just coming out of it.  Will probably have to try the Lipitor again, after feeling better for awhile, just to be sure.  Saw Rheumie yesterday - waiting for blood results, but an xray and bone density revealed osteoporosis and scoliosis.  Have to start Fosamax. 
 
Anyway - didn't want to deter anyone from Plaquenil - it wasn't the culprit with the muscle pain!
Lucy   
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


anniecrowley
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Date Joined Aug 2008
Total Posts : 6
   Posted 6/3/2009 8:29 PM (GMT -6)   
Listen...Plaquinil is BAD Stuff...My mother is not blind because of it...If you notice ANY changes in your vision...either by way of color and or something blocking your vision you need to see your DR right away and discontinue medication....

annie

PattyLatty
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Date Joined Mar 2006
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   Posted 6/4/2009 8:16 AM (GMT -6)   
Annie, We are all told that we have to see an opthalmologist twice a year when we are on plaquenil to make sure it is not affecting our optic nerve. I'm so sorry about what happened with your mom.

While problems such as your mom experienced are extremely rare, it's still imperative that anyone taking plaquenil get regular eye exams.

Lucy, I'm happy that you discovered to root of your problem! Thanks for the update.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


anniecrowley
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Date Joined Aug 2008
Total Posts : 6
   Posted 6/4/2009 1:13 PM (GMT -6)   
I understand that you need to see an eye dr...she was doing this every 6 months to a year...had no problems until November 2005..at which time she reported visual changes to her eyes to the treating eye Dr. there were clear changes in her amsler grid and marked visual disturbances...The eye Dr. did not discontinue the medication or suggest to the prescribing Dr. then or even up to 11 months later when the bulls eye was present. At that point she was sent to a specialist whom stated that she had "texbook Plaquinil Tx" and that she should D/C plaquinil right away...My point is that you need to make sure that the eye Dr that is monitering you needs to know what to look for and what it looks like...it is rare and many eye doctors are untrained in how to see tx before it reached the full blown stage...when it gets that far the damage is done and there is no return...

jhmom
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   Posted 6/4/2009 1:35 PM (GMT -6)   
That's why seeing an Opthamologist not an optometrist is so very important. I think the chances are better that they will be trained in Plaq toxicity and we should always ask that question!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


anniecrowley
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 6/4/2009 9:43 PM (GMT -6)   
Funny thing is that even the first Opthamologist missed the diagnosis...So again be very careful...many have NO IDEA what they are doing....when it comes to this diagnosis..If you notice vision changes get to your prescribing Doctor and DEMAND his discontinue the treatment or you too may be BLIND...don't always trust what you are being told, if your feel there is a problem demand an answer and fast as it could effect your ability to live a normal and productive live for the rest of it...not being able to move and not being able to see is really NO way to live...

PattyLatty
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Date Joined Mar 2006
Total Posts : 2563
   Posted 6/5/2009 9:04 AM (GMT -6)   
The opthalmologist who kept her on the med after seeing changes in the amsler grid would be in court had he been my doctor. When did this happen?
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


anniecrowley
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 6/5/2009 9:55 AM (GMT -6)   
We are working on a medical malpractice suit...This whole thing started in November 2005 and she was not diagnosed until September 2006 at which point she had see her regular eye Dr. and then an ophthalmologist who totally missed it as well..even with changes in the amsler grid and changes in her field vision told her she had corrotid artery disease. Which she went through a bunch of test for and found to be untrue, finally in September after she insisted that she be seen by someone else because she felt she had either plaquinil tx or a brain tumor because something was BLOCKING her vision was she sent to another Ophthalmologist who reviewed her photos of her eyes and previous test and said..I don't even need to look into your eyes...I see right here clearly that you have "Textbook Plaquinil TX" Discontinue the medication NOW...

Believe me if I knew then what I know now I would have told her to discontinue the medication. The regular eye DR that had seen her for years say he is not one bit a fault and that he should not be help accountable for his lack of actions...what a jerk...

Annie

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 6/7/2009 6:41 PM (GMT -6)   
Which opthamologist you see is so important. Mine has been an opthomologist and eye surgean for more then 20 years and has seen cases. His newest partner has never seen it except in textbooks. He is a fine doctor (the new partner) but should not be handling plaq patients by himself yet.
I have retnal photography done every year as well as the visual field test.

anniecrowley
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 6/7/2009 7:48 PM (GMT -6)   
That is the problem...this Dr. said he was capable yet had no idea what he was doing...he should have to pay for his incompetence but most likely he will get off. I have also reported him to the board of medicine...

cellophanemanghost
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 7/31/2011 10:45 AM (GMT -6)   
Annie, I desperately need to get in touch with you about this. I am going through the same thing with plaquenil. I had almost the exact same experiences with doctors as your mother. My opthomologist missed the Plaquenil Toxicity for15 years, insisting it was some kind of migraine! I am trying to decide whether to take legal action, and I have waited almost too long, as the statute of limitations runs out soon. I would love to talk to you...if you still monitor this board would you please reply? Thanks!

anniecrowley said...
That is the problem...this Dr. said he was capable yet had no idea what he was doing...he should have to pay for his incompetence but most likely he will get off. I have also reported him to the board of medicine...

sick & tired of being sic
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Date Joined Sep 2011
Total Posts : 2
   Posted 9/13/2011 4:09 PM (GMT -6)   
This is a new question concerning an old post. Plaquenil and muscle pain. I thought that maybe my question had been answered when I read that Plaquenil was responsible for your muscle pain but, as I read on I realize it was not. I TOO have severe muscle pain and cramping in my legs. Only when trying to sleep. If I get up and walk around, my legs feel fine w/in a few minutes. I've tried more exercise, less exercise, BenGay cream, Extra-strength: Tylenol, Advil, Aleve, Excederine, Night time versions too. Doesn't even touch the pain. Lyrica doesn't work. I'm currently taking Tramadol. The prescription is for (325 mg) 1-2 tabs 2Xday but I've bumped it up to 4 tabs twice a day and still no relief. I've asked my rheumy about it and she said she didn't know what caused it. Told me to increase my lyrica but it didn't help. My GP was no help either. Any ideas. My docs seem more interested in prescribing pain killers than finding out the cause. I'm about to lose my mind.
I still take 400 mg Plaquenil daily and 12.5 mg Methotrexate weekly. No prednisone currently.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12403
   Posted 9/13/2011 5:54 PM (GMT -6)   
Do you think it's Restless Leg Syndrome?

My mother gets leg cramps and the doctor told her it was her potassium levels.
Joy

sick & tired of being sic
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/13/2011 5:59 PM (GMT -6)   
I didn't think restless leg was as painful as this. I had my potassium checked. Not that. thx.

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 106
   Posted 9/14/2011 11:24 AM (GMT -6)   
Oh geez annie that is terrible. I am so freaked out about that side effect and after reading your moms story I think I might stop this med.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5758
   Posted 9/14/2011 12:02 PM (GMT -6)   
Plaquenil has helped my muscle/joint pain immensely. Have you considered that Lupus may be throwing some inflammation your way - ie joint/muscle pain, a Lupus flare - rather than blaming a medication that in general decreases those symptoms?

Most of us that have tried stopping plaquenil have found that it was doing more good than we realized, and promptly resumed taking it!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

cellophanemanghost
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 9/20/2011 5:39 AM (GMT -6)   
Try Cymbalta. I've been hearing great things about it helping joint pain, restless leg syndrome and others. I advise everyone to stop taking plaquenil. It has cost me my eyesight even though I did everything I was supposed to do as far as eye checks. Opthamologists don't really know how to do plaquenil exams. When they find it, it is too late, you already have plaquenil toxicity.

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted 9/20/2011 1:11 PM (GMT -6)   
I went to the opthamologist BEFORE taking the medication to get a baseline. I just started the meds but plan on seeing her every 4 months. The Dr. has seen Plaquinil TX in people before and knows what to look for. She said that she would catch it before I would even notice any visual effects. She also said that steroids can damage the eyes as well. (That was news to me)

I am sorry to hear about your mom. Does she have some vision or do you have to take care of her full time?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2563
   Posted 9/21/2011 12:24 AM (GMT -6)   
Sick and Tired, Restless leg syndrome can be very severe. Mine is painful and bothersome, but not like that of a friend of mine who takes several meds for it plus a narcotic, and ended up moving into the guest room because he kept his wife awake while he paced the floor at night to try to get rid of the pain and cramping. A sleep study will determine whether or not you have it and to what degree. The only thing I take for mine is Neurontin, and it gives me great relief. Just something else to check out. It gets old, doesn't it

And, as far as Plaquenil and eye problems, the Ophthamologists I've talked to (including a Neuro Ophthalmologist) say that while Plaquenil can cause serious damage to the optic nerve, it's very rare. Annual appointments with an ophthalmologist are important in order to catch any problems early.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

cellophanemanghost
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 9/23/2011 7:44 AM (GMT -6)   
See that's the problem with plaquenil and opthamologists. You say they are telling you it causes optic nerve problems? It doesn't. It accumulates in your macula and eats holes in your retina. I saw an optho every year for the 27 years I was on it. 15 years ago, I started experiencing vision changes. That is when the toxicity started. If he had taken me off the plaquenil then, I wouldn't be almost blind now. He did not know the symptoms, and did not perform the correct tests. Plaquenil Toxicity is so rare, the doctors don't know what it is, what the symptoms are, or how to exam patients for it. Anyone who is on plaquenil, and you experience ANY type of visual disturbance or change...STOP TAKING IT IMMEDIATELY!

Lynnwood
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Date Joined May 2005
Total Posts : 5758
   Posted 9/23/2011 8:28 AM (GMT -6)   
I suspect the difference is that things have changed in the last 15 years. Perhaps 15 years ago they didn't know to take you off of it immediately. In any case, I'm so sorry you've lost your sight.

Just a few months ago they started using a new test, OTC Retina, so that the eye can be examined quickly and thoroughly by a laser for very early detection of any issues that may occur.

Remember, Optometrists aren't good enough, guys, make sure you see an Ophthalmologist! Ophthalmology is the branch of medicine that deals with the anatomy, physiology and diseases of the eye. An ophthalmologist is a specialist in medical and surgical eye problems.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

cellophanemanghost
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Date Joined Jul 2011
Total Posts : 36
   Posted 9/24/2011 9:09 AM (GMT -6)   
My point is I noticed a visual change 15 years ago and went straight to my ophthalmologist and my rheumatologist with it, who both assured me it wasn't caused by the plaquenil. I didn't just go 15 years ago, I went every year and was told the same thing. When I finally started losing eyesight, I went to an opthoneurologist because I figured if it wasn't the plaquenil it must be something to do with my brain, but he found it immediately by barely looking in my eyes, 2 weeks after my last exam with my regular ophthamalogist. 15 years ago the toxicity had started. If they had taken me off Plaquenil then, even though there were no signs of damage at that time, my vision would have been saved. It's only in the later stages when the damage starts to physically show up. So you can take all the pictures, angiograms, lasers, whatever and you can be toxic and it not show up. Once it shows up, it's way to late. So the doctors need to listen to YOU. If you see any changes in your vision, you should be taken off the drug immediately. In the meantime, a proper plaquenil exam consists of a color chart test, an Amsler grid test, and a field accuity exam. These will catch it before they look at your retinas and see holes in your macula, which is what I have. I know about this disease. Once they find it with a laser, a picture, an angiogram, whatever...it's too late.

Lynnwood
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Date Joined May 2005
Total Posts : 5758
   Posted 9/24/2011 10:11 AM (GMT -6)   
cellophanemanghost said...
In the meantime, a proper plaquenil exam consists of a color chart test, an Amsler grid test, and a field accuity exam.


Yup, and added to those they now have added a laser retina exam.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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