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managing plaquenil side effects

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Posted 1/12/2008 1:15 AM (GMT 0)
about seven years ago I was on plaquenil for about six months but had to quit when it made me feel as if I were motion sick all the time.  It put me into a long lasting partial remission though.

Recently I broke my own rules of not working more than thirty hours a week, minimizing stress, etc.  (I went to school for two years while still working and then took a national certification exam).  Predictibly I could not walk the day of the exam-less predictibly for me I did not go back to "normal" after taking a nice long vacation.  In fact I just kept getting worse.  Then had to wait six weeks to see my Rhuemotologist so I ended up on Prednisone for the first time.

Obviously I asked to go back on Plaquenil as it worked so well the first time.  But the motion sick feeling is back.  It only lasts about half an hour right now but each bout is longer than the last one. I don't want to give up the plaq. (I'm taking 200mg's twice a day) the doc suggesting dividing the dose to minimize the stomach upset she said for most people she would have them take the whole dose at once.

Anyone else had this problem on plaquenil?  How did you manage?  My disease isn't serious enough for the doctors to concider the biologics and they want me of Prednisone pretty soon so I don't have a lot of other medication options.

Posted 1/12/2008 5:20 AM (GMT 0)
Hi,
I was having the same problem, and after a few weeks it got so bad that I would literally have to pull over on the side of the road to get sick. My Rheumy lowered my dose to just 200mg a day instead of 400mg dailly. So far so good.
I started taking it in the late evening as well to try to sleep thru the nausea and dizzyness.
Hope this helps

Raven
Posted 1/12/2008 1:25 PM (GMT 0)
hi sj sry to hear you have motion sickness from the med. have you tried taking it a bedtime?????? that is what i do for the mtx to curve the side effects????? i basically sleep through them??? sont know a ton about the plaquenil. dry i cnat be of better help. hang in there. yally
Posted 1/12/2008 4:13 PM (GMT 0)
Raven and yally, thank you for the ideas, I think I will try taking the whole dose at bedtime as one of my favorite side effects of plaquenil is that it has cured my RA induced insomnia. If that doesn't work I will talk to my doctor about the lower dose-hopefully I can put that off until I am off the prednisone and not having flares.

SJ
Posted 1/13/2008 6:59 PM (GMT 0)
I also take Plaquenil and I just take the entire dose at bedtime because I am horrible at remembering to take pills! I had some tummy upset in the beginning but not to the degree you are mentioning. Either try to cut your dose in half or take all at bedtime maybe? Your tummy upset should be subsiding and not getting worse..Maybe take a look at anything else you may be taking along with it? Other meds? It seems to be a simpler med when compared to some of the harsher ones like MTX but I found out from my RE that this med can also contribute to ovarian cysts etc, so maybe see if there is another medication that works like plaquenil? Plaquenil can really wreak havoc on your system I guess!

I hope you find a solution soon!
Posted 1/14/2008 3:36 AM (GMT 0)
Hi, do you take your meds with food? I"m sure you do, but I found when I don't with the plaquenil, I have a slew of issues that don't normally happen when I ensure I have more than a cracker in my belly with it.

good luck. **

Posted 1/14/2008 12:56 PM (GMT 0)
right now, I have no side effects from the plaquenil.  When I first started it, though, I did feel quite nauseated.  I made sure to take it after lunch, when I had food in my stomach.  When I took it first thing in the morning, the nausea got quite bad for me.  Taking it at bedtime might not be a bad idea either (but I never did that).  In any case, it went away after about 4 weeks.  I guess my system just had to get used to it.

Since the drug helps you so much, I really hope you can work through the stomach issues.  Best of luck.

El

Posted 1/14/2008 9:45 PM (GMT 0)
Thank you for even more good ideas. I have always taken the plaq with food but recently discovered from keeping a journal that I am much more likely to have the motion sickness if I go for four hours without eating. (I never have these side effects right after taking the med but at seemingly random times in the afternoon.

So I am now sticking to a careful schedule with my meals and snacks and watching to see what happens-also swithched whole dose to bed time. So far no motionsickness today.
Posted 1/15/2008 2:43 AM (GMT 0)
Hi there,
Looks like you have gotten some great answers here...don't think we've "met", but welcome to the forum..hope you find as much help and support here as I have, this is a wonderful group of people. Don't know where I'd be without them.
I take plaquenil, too, it's been a little over 5 months for me. I take 200mg in the morning and again at supper. I can't say that I had the results I had hoped for, but am still giving it time. Hopefully, it will kick in all of the sudden....
So glad that the sickness has improved for you, great idea of keeping a journal!
Take care,
Jody
Posted 1/15/2008 3:16 AM (GMT 0)
I wanted to thank everyone again.
Hi 'babyplace" Ive read some of your other posts but I don't think we have "met" yet.
It seems that I can track the cource of my disease by how much time I spend on message boards. When I first got sick I was almost completely debilatated for three years and the internet was new I joined several arthritis chat rooms.
Then along came sulindac and plaquinel. I dropped out of the arthritis chat rooms until this flare scared the life out of me and I ran back to my Rhuemotologist and the chat rooms. Due to the prednisone I feel great now but am still scared to death of this disease-after seven years I did not know it was possible for me to go back to being that sick. It will probably take me a while to trust my new found relative health.
Posted 1/21/2008 10:27 PM (GMT 0)
The plaquenil is making me sick today which is making me want to whine and my family is sick of listening to me. So I decided to whine here instead.
SJ
Posted 1/21/2008 10:31 PM (GMT 0)
hey SJ.. that's what we're here for.. whine away! So sorry you are feeling poorly today.. wish there was something I could do
Posted 1/30/2008 3:50 AM (GMT 0)

I just started plaquenil and I can relate to the nausea that others have posted about.  It is the worst!  I have been making the mistake of taking it in the morning, but see from some of the posts that I should maybe try it at bedtime.  The roller coaster dizziness stopped being fun a while ago, so hopefully that will stop too.  I was diagnosed October, 2007 one week after my 44th birthday, and boy I felt like crap.  I knew something was so very wrong because of the sudden and intense bilateral pain, and luckily I got in to see a rheumatologist quickly who diagnosed me.  I am on methotrexate and now plaquenil, and doc says if this doesn't help will have to try Enbrel.  I have so much swelling and pain in my feet and shoulders.  Is that common? I sometimes cannot even stand for water to touch me in the shower.  I had a brain tumor and a couple of brain surgeries, and this is tougher than that. 

 It is great to have these boards to come to and all of you to turn to.  Thank you.

Posted 1/30/2008 2:07 PM (GMT 0)
I'm so sorry you have to go through this. I find that eating every few hours helps with the nausia and dizzyiness. Unfortunately for me the plaquinil is causeing a loss of appitite so I'm haveing to force myself to eat enough to keep the plaq from making me nausious.
I hope your new meds work well for you-take heart most people find the side effects fade with time.
Sj
Posted 2/7/2008 3:53 PM (GMT 0)
I also have nausea for years with it. I take the generic form which if it gets a drop of water on it... breakdown.. which makes it taste so much worse. I had the same problem when I took penicillin VK as a kid on 2 occasions. I spoke to my Rheumy about it yesterday and she said it was the Mobic.... I should have let her know the nausea occured in like 5 minutes. My doctor and I grew up in medicine together and don't see eye to eye at times. I just got my refill and am going to try the BRAND name drug. Maybe the coating is better. But, I will always try to eat food with it.
Posted 2/7/2008 10:44 PM (GMT 0)
Nurse,
I just had the same conversation with my rhuemy she wanted to immediately switch me to the brand name but I convinced her to let me lose a total of 40lbs first. I lost 17 in the first eight weeks. (I tried to get her to raise the total but she said poisoning myself might not be the best way to lose weight).
Sj
Posted 2/7/2008 11:17 PM (GMT 0)
sj you made me giggle a bit. not the way we should diet - but aint it grand when we loose weight! teehee seriously hope you feel better on the brand drug when you start it.
Posted 2/8/2008 6:39 PM (GMT 0)

Got a laugh out of that myself...I wish that would happen to me!  lol.  Keep hoping ONE of these meds would take away my appetite!  Been on plaquenil generic form since August, hasn't affected me at all. I take it with food, without, doesn't seem to matter.  But, I do HATE the taste of those pills..yuck

Take care you guys..hope changing to the brands helps you both.

Jody

Posted 2/8/2008 7:17 PM (GMT 0)
I have been taking the plaq for a long time and seem to take so many others along with them I guess I didn't notice they had a funny taste??

Jody, I think the MTX could be great for weight loss? or maybe just RA in general? It seems since on the MTX, I am not that hungry, and have lost a good 8lbs.
Posted 2/8/2008 10:19 PM (GMT 0)
Some of my appitite loss may have been the augmentin or the combo of aumentin and plaq because now that I'm off the augmentin I don't have trouble eating enough to prevent nausia-I still have less than normal appitite though so I'm taking advantage of that and trying to eat healthier and keep losing some weight.
Sj
Posted 2/17/2008 8:41 PM (GMT 0)
How's that weight loss coming Sj? hhmm.. maybe I'll go on plaquenil! :)
Posted 2/18/2008 2:26 AM (GMT 0)
Ducky,
I'm not losing as quickly now as when I was on both plaq and augmentin-at that point I could not eat much of anything. Now its just that the plaq makes it easy to walk past the secretaries candy bowl-actually I forget its their-where as before I walked to the bowl three or four times a day. I'm taking advantage of that by following a calorie controlled diet and most days I find I have four or five hundred calories left at the end of the day that I would rather not eat. (trust me this has never happened to me before in my life).
I'm glad your husband is home safe.
Sj
Posted 2/18/2008 3:54 PM (GMT 0)
Sounds like you are doing quite well Sj! That is so good to hear! You're losing weight the healthy way, good for you!
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