Stopping plaquenil

[Winnie]

I have been on plaquenil for several years and am pondering the idea of asking my rheumy in July  about stopping it. I do not have a diagnosis but have a positive ana and possible celiac disease.  Was put on it because of fatigue. I am on a gluten, dairy, egg and peanut free diet. I feel normal now but still dry.  I am working full time, exercising, gained my weight back and also weaned myself off an anti depressant.   I get tired still but not like before. My joints hurt mildly on occasion or when it rains.  So is this a bad idea?

Winnie

[Maria3667]

Hi Winnie,

Why do you want to quit Plaquenil?

You could try it out & see if it makes you feel any different. If symptoms worsen, you could always add back the Plaquenil.

But maybe it's a better idea to cut down on Plaquenil slowly? Then if symptoms go bad, you'll know what it's likely to be caused by. In the meantime you might still benefit from the Plaquenil being active in your body.

[cccourt1942]

Maria makes a lot of sense on this one.  I discussed plaquenil this week with my rheumy.  He denied me as he claims he has never seen one study which was definitive regarding the medication.  I was stunned.  Almost all of you swear by this drug.

I agree you should wean yourself if you are doing this without dr's advisement.

[Tivia]

I wouldnt stop till I discussed it with the doctor, then I would slowly wean off. No matter what they say any medicine you have been taking consistently for a long period of time needs to be weaned. The body adjust to having those drugs in our system going cold turkey would be a bad idea. So try a taper if the doc says ok.

[anita]

That's a decision only you can make.  But have you considered that the reason you feel as good as you do IS because of the Plaquenil?  Especially the fatigue and joint pain...which is what Plaquenil usually helps most with.

Keep in mind that Plaquenil has a half life of 30-60 DAYS, so it will take a while to get out of your system (as for why it also takes months sometimes to build up and start working).  Then if you find it wasn't as good idea, it could take a while to build back up again.

I think WE ALL feel at some point (especially when we feel good) that we don't need some of our medications.  It's a normal thought process.  I would suggest you talk it over with the doctor first.  The worst thing that could happen is that you find you really need it and have to restart it...and give it some time to build up.

[angeldancer]

The suggestions makes a lot of sense.  I know that if I am taking meds to help a particular problem and it is not helping, I tell the doctor.  No point of taking meds if they are not helping.  However, if it is helping (in my case neurontin really helped my neuropathy) I will weigh the cost benefits because of the side effects.

[SjoGirl]

I recently asked my rheumatologist about stopping, she advised against it thinking that while it is not a cure all it does have benefits.

[warmwaters]

I guess the question is, why do you want to stop it?  Side effects? Don't think you need it? Cost?

If it's mostly a benign drug for you, do discuss it carefully with your doctor.  I get no seeming benefit in terms of pain relief or fatigue improvement, but my rheumy feels it is still worth doing as it may have the effect of slowing the disease progression.

So do discuss it.

[holdyourlane]

I would wholeheartedly not recommend discontinuing Plaquenil, at least not without consulting your doctor first.  I made the mistake of stopping the drug a few years ago and it was one of the worst decisions I've made.  At the time I was only presenting with Ro and La antibodies and my disease process was mild...undifferentiated at best.  A year and some change after not being on Plaquenil, and my disease process progressed with a vengeance and now I have a party of antibodies (dsDNA, Smith, Ro, La, low complements).  I had no idea what benefits the drug was offering me at the time, but I regret ever stopping it.  My disease may have still progressed either way, but I know I definitely sped the process up.  Everyone is different, but from my own experience and hearing from others, I know that the benefits of Plaquenil are often so gradual and quiet that you barely know it's working until you stop it.

[Winnie]

My rheumy asked me some questions last time that made me think that he wasn't sure that I had anything wrong with me. He also stated that celiac can act this way.   Guess I will see what happens in July. No I have no plans on reducing my medicine without approval.  Just wanted some suggestions.

Winnie