Yes I'm insane, I stopped taking the plaquenil and boy do I regret it!

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momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 12/4/2006 10:34 AM (GMT -6)   
I have posted here a few times and I was taking plaquenil for about 3 weeks and the difference in my symptoms was huge, the hip pain was almost gone and I felt so much better.  However, I started getting some acne, and at first I thought okay not a problem it will go away...
 
Well soon the acne turned into these oozing sores on my face, it was awful, and so embarrassing, I decided to stop taking my plaquenil, somehow convincing myself that the pain I had before I started it wasn't that bad and besides my RA test was negative anyway.
 
Two days without plaquenil and I feel like I have been run over by a truck sad I feel like I have the flu, that is how much I hurt all over...
 
I was reading the other post on plaquenil and it really can make a difference and you don't realize it until you just stop taking it!  Needless to say, I regret my choice, but I don't know what to do about my skin issue either confused
 

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 12/4/2006 5:08 PM (GMT -6)   

so are you going to go back on it?

think about 1st though...are you allergic perhaps to it?  anything else weird happened while on it?

we feel physically lousy...and then "looking" not so hot doesn't help, i know.  and of course in turn that could make ya feel even worse!

sincerely, if you're not having an allergic reaction to it; it could be just time that will have to run its course that your system will adjust & the acne will clear.  topical steroid creams by RX can help lesions & sores that arise from meds like this.  i would talk with your doc honestly about it.  i mean, a doctor has to treat the "whole" person...and that is the condition & all of the followings that come with a condition.

you said you regret your decision...take some time & think.  is it that you are not sure about the RA diagnoses?  is it not definitive? 

write back when you can.

take good care,

erin


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 12/4/2006 8:57 PM (GMT -6)   
I am on plaquenil and so fare I have not had sores on my face but I do have them on the bottom of my feet and when they bust open they will have puse like stuff and they hurt.Both of my feet are in bad shape and so for now I'm having to wear my house shose because my regular shose hurt to wear.I all so get these on my back as well and my hands and feet are peeling as well and my Rheumy told me that was some of the side-effects that comes with taking plaquenil.But you have to remember that every body is different and responed differently to the meds.
Curley
.........
 


CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 12/4/2006 11:52 PM (GMT -6)   

I would definitely speak to the doctor about it. Maybe even get a referral to the dermatologist and see what he says. That's really a tough call - you feel great, but are too uncomfortable about the acne. Like Erin said, if you wait it out, it MAY clear up on its own once your body adjusts - but who knows for sure.

Good luck and let us know what the doctors say and what you decide to do.

***


 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/5/2006 1:03 PM (GMT -6)   
gosh mom23- i feel for you .....
 
 i dont take that med but i have decided that arthritc meds are like men, sry guys,
 
nono you cant live with them- you cant live without themnono UGH! heheheheheeehehe
 
  ps i love my hubby tongue but.......
 
 i agree with the slogan  tongue  
 
~* yalinda eyes

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/6/2006 10:44 AM (GMT -6)   

Thanks everyone,

Gosh I just hate sounding so vain about it...and by last night I could hardly get up the stairs, and my hips hurt so badly I could hardly sleep...so I am now back on the plaquenil.....

I think it was Curlly who mentioned something like this on the feet? Sounds almost like the same thing, and I even get them in my nose (so sorry if tmi) I am still getting break outs, however, not nearly as severe as I was.

I do know I am having one heck of a flare!!!!  so I don't have a choice but to get back on the plaquenil, I can't go around feeling like this, when that helped the way it did.

My RA test has been negative twice now, so I was hoping maybe this is just in my mind smurf but when I went off the plaquenil, sure enough I ended up with a flare sad   and it began to work within a few weeks, I felt relief, it looks like I need the plaquenil sad .  While I am happy that it works, it makes me sad that it does, because it means there is something wrong with me.

However, today is a new day, and I am back on the plaquenil and will wait for it to start working again.  I'm going to call my doctor and explain my skin issue.  I'm sure it's not the first time he has heard this one!

Yalinda...I knew I liked you! tongue   Girl..you are too funny!

Thanks for the support everybody :-)


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/6/2006 8:25 PM (GMT -6)   
i know what you mean as my RA was neg too but the other 2 inflam blood tests were elevated for me so they tell me RA often is neg. and sometimes it can be a positive test with no RA symptoms present-the reverse.

are u feeling any relief yet from the plaquenil. sores? are they back? keep us posted. ps i like u too :) yalinda

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/8/2006 12:59 AM (GMT -6)   
well gollie gee i like you both! tee hee hee. tongue
for all new members who read this...our gals here bring up a great point.
false negatives and false positives and seronegative diagnoses.
it's important to remember that rheumatics is not "arthritis" and RA is not just "arthritis" .  rheumatics studies the soft tissues, connective tissue & joints involved with systemic inflammatory disease.
i know many are frustrated as to not having clear answers & are frustrated in waiting...but it take several years sometimes for a correct Dx to be made.
rheumatics is an art too more than a science.  so the treatment is only as good as the rheummy.
and momto3...it is totally cool to express your feelings. you might be saying something that smeone else is dying to say but can't!
the sores are hellish.  i successfully have not taken any prednisone since monday because i want to "feel" better. yeah that mean i wanna look better! and so if that means a week or so of clear skin? so be it!  we all need a holiday...but for daily meds?  you really need to stick to it!
we love ya just the way you are.
hang in there tiger!
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 

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