Why do some members choose not to take plaque nil?

[Chrisb]

Hi All,
I was reading through old posts and noticed that a lot of members are not taking  plaquenil.  Is this by choice or was it because of the side effects?

Thanks so much,
Christian

[eyeamdry]

Christian, I think you'll find more that are taking Plaquenil that don't want to/can't take it.  Of course, it's not for everybody.  When I came on here 6 years ago sicker than a dog, if I had read all the negatives of Plaq and Methotrexate, I probably would have hesitated.  Still many hesitate, but if it helps you great.  If it makes you feel not so good, you can just stop it.  Good luck.
Lucy

[stillinshockwithsjogrens]

I do not take Plaquenil.  My primary symptoms are dry eye, mouth, eustachian tube dysfunction, loss of sense of smell/taste and some joint pain.  My Rheumy did not recommend Plaquenil because he said he didn't see swollen parotid glands and felt I wasn't at a point where I needed anything other than Evoxac and Aleve.  I am really dry though, but he said that Plaquenil wouldn't help the dryness.  I don't suffer from tiredness/exhaustion; I  have alot of energy; so I guess I am not a candidate for it....and from a completely vain point of view, I do not want to lose any more hair than I have already!

[Saundra]

Hey Christian

Mine had me on it, after my appt this week he took me off.  He was terribly disappointed even said so.  He did say that if I wanted to retry before my next visit to go half the doasge.  When I do try it will be the 3rd try.  Me personally the nightmares, the total bitch I had turned into were unacceptable for now.  The nightmares stopped immediately and I'm not so mean now.

I'll probably retry after the holidays though.  I'm one of those people who a drug either hates or loves. 

XOXO
Ldy

[LisaMarie]

I have been taking plaquenil for a year now.  I believe it is doing wonders for me and would not want to stop taking it at this point.  My rheumy has me taking it before bed so that I wouldn't notice some of the early side effects as much because I would sleep through them (the stomach issues).  Dryness is really still an issue but I believe it has helped with the general bone pain I was suffering, the brain fog/memory, and some other symptoms. 

[Iris]

I would still be taking it if I hadn't been allergic to it.. The short time I was on it I could tell it was already helping my joint pain.

[SjoDry]

I think it's a quality of life issue.  No one wants to take heavy duty meds if they don't have to.

Some can't tolerate the meds or just choose to try to tolerate & live with the medical symptoms. Others of us, like myself,
decide that the daily suffering we are facing can't be much worse than any medication side effects. I did my due
diligence like everyone here & decided that Plaquenil was a "crap" shoot. The minimal side effects & great improvement
in my pain level, have made me a believer in Plaquenil (just started November 1st). At the end of the day, it's individual choice.

Good Luck.
SjoDry

[rnathans]

I was taking it for quite a while with no side effects. But when I developed gastroparesis and neuro symptoms I was put on stronger immunosuppresants instead. They work better for me as far as slowing down the progression of these problems.

[slccom]

I've been taking it for a long time, too, and have never had any issues at all with it. Please, take your meds with a positive attitude, do not look up "side effects," some of which are actually not due to the medication. The way the FDA does things, anything at all reported by someone has to be listed. So, if someone gets a broken bone while taking XXX, the fact that they had undiagnosed pre-existing osteoporosis doesn't factor in, so the broken bone gets listed as a "side effect." DO look up "nocebo effect" to see how it is documented that people can develop "side effects" if they are told that the placebo pill has them.

That said, there are people who genuinely cannot take meds for whatever reason. There is a small population missing a particular enzyme in their liver which makes many meds dicey for them. You can be taking something with optimism, as I did with a particular anti-inflammatory and still break out in hives. But you need to not let yourself be scared off of medications that can keep you from getting worse. Keep in mind that Sjogren's can affect the internal organs as well, so preventing progression is important.
Sharon

[olmphoto2]

You made some excellent points, Sharon!

[Friedbrain]

Well, I was only on it for three weeks but during those three weeks, I did experience a reduction in some of my symptoms (aches etc).  My young doc's attitude (for right or wrong...) was to try it and see what/if it helped....!  I was desperate enough by that point in Oct to finally go along with that logic.  However, I started experiencing a trunk rash, probable allergic reaction (I had a similar allergic reaction to another drug once before-lamictal), so had to stop.  To say I'm disappointed is an understatement.   

[Calli66]

I quit after 2 years because of intestinal upset---horrible sensitivity to lots of foods, esp. fruit---bloating, etc.---I felt like I couldn't eat anything without upset, no matter how much I tried to modify my diet.  And also I had nightmares and disturbed sleep. So the "cons" were worse than the "pros." I can't tell you if there WERE any "pros." But I don't have the severe joint pain or fatigue that some people have---Plaquenil seems to help those symptoms. I mainly have low platelets, WBC, dry eyes, and somewhat dry mouth, and Plaquenil didn't improve those things.

Calli

[MaryBee7]

I've been on Plaquenil since May of this year.  Lucky to have some of you post about the nightmare issue because I had no idea what had been causing my strange dreaming, must say I've been tempted to stop taking it since I have such horrible sleep issues already.  Plaquenil has helped my joint pain, no improvement in energy level really, and I appear to have some other pieces of this syndrome that are progressing. 

[eyeamdry]

It has done nothing for my dryness issues though.  Wanted to add that.  Lucy

[Chrisb]

Thanks so much everyone.  This is why I'm so nervous about taking the drug.  I have no joint pain yet and I'm tired but not unusually.  I've always been tired.  I thought maybe from the anemia?  Anyhow, I'm wondering if it's worth me being sensitive to the sun, losing more hair and then the bleaching of the skin since I already have vitiligo. What to do.... what to do.........

Does it really slow down the progression of the disease? That's the magic question.  So frustrating not knowing what will happen.