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Old 05-26-2007, 12:55 AM   #1
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Question Have SLE and NOT on Plaquenel??

Is plaquenel a standard medication that people with SLE are supposed to take??? I was diagnosed with SLE in Dec of last year, and Lupus Nephritis IV two weeks after - had 5 rounds of chemo (cytoxan), now on Cellcept due to complications with the chemo. Started off on 60mg of prednisone, now at 30mg, plus many other medications as well - norvasc (HBP), acyclovir (shingles), potassium (low levels), actonel (osteo), iron (anemia), calcium (bones), zoloft (depression), prenatal vitamin (xtra vitamin), restoril (insomnia), antivert (nausea), baby aspirin 81mg (blood thinner), lasix (fluid retention), Lortab (pain), but never has plaquenel even been offered or even talked about by my rheumy.

Is there anyone with SLE that is not on this medication, and why not? I'm still learning so much, and trying to learn as much as I can. I'd really appreciate as much input as possible....thanks!!!

 
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Old 05-26-2007, 08:52 AM   #2
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Re: Have SLE and NOT on Plaquenel??

Hi Ragin,

I'm sorry that you have so many complications from lupus. I do know that lupus does not affect everyone in the same way. I have been on plaquenil for maybe 2 1/2 years now and have also taken rounds of prednisone when I had a bad flare. However, I am lucky that I don't think i've had major organ involvement. Mine definitely affects my skin, joints,muscles, and cognition but i've never been told I have organ involvement (though I did have blood & protein in my urine once and have many UTI's, etc..) But since taking plaquenil so long, my flares arent so bad and they dont last as long as they used to :::knock on wood:::. So it sounds like your lupus might need to be treated more aggressively than with plaquenil..maybe that's why it was never mentioned to you. I think it is more of a long term maintanence drug but may not work for more severe cases.

 
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Old 05-26-2007, 03:42 PM   #3
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Re: Have SLE and NOT on Plaquenel??

Hi. My understanding is the same as Baybreeze's: that Plaquenil is not appropriate where there's major organ involvement. This is basically how I understand the writings of Dr. Daniel Wallace, in his lupus hardcover, in his section on meds.

Another author who covers the same ground is Dr. Robert Lahita. (Both are well-known rheumies.) I think most libraries & bookstores have either/both authors. Maybe they could shed some more light on your question.

How are you making out with the Cellcept? Better, I hope! With my best wishes to you, Vee

 
Old 05-27-2007, 07:32 PM   #4
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Re: Have SLE and NOT on Plaquenel??

Hello,

I have had SLE for 30 + years and I haven't taken Plaquenil. It doesn't suit everybody nor is it used by patients with organ threatening lupus as said by baybreeze and veej.

Hope this info helps.

Take care.

goldenwings
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Old 05-28-2007, 12:56 AM   #5
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Re: Have SLE and NOT on Plaquenel??

Hi there. Sorry to hear you have started off with such a bang with SLE. Plaquenil took 8 months to start working for me and I know Dr. Wallace and others (he's my doc) report that it can take several weeks to months to be effective. I'm guessing your doctor is more concerned with putting out the big fires for now and you certainly are on enough drugs. I'm on a lot of meds too. I still take Plaquenil daily but often I think it does nothing at all for me. I'm in the camp of thinking it's sort of a better-than-nothing drug that's considered "steroid-sparing," meaning over the long term it may allow me to take lower doses of prednisone than I would require without plaquenil. (I recently got off of daily prednisone 10-20mg and am down to 10-20 a couple days a month.) Plaquenil's certainly not helpful as a quick response to organ involvement like prednisone are chemo drugs are. So maybe it's just something to ask your doctor about next time you see him.
If you do take it, take it with a meal. Anything less than an actual meal always gave me severe stomach problems.

In case no one has warned you (no one warned me!) - prednisone can make you a bit crazy - like a meth addict! Apparently it doesn't do it to everyone, but for me, 20 mg and I am hallucinating and moving at 100 miles an hour, staying up for days. I have to take tons of xanax to counteract that. Just letting you know in case you encounter weird side effects that you have not lost your mind! : )

I'm keeping my fingers crossed for you to get your SLE under control quickly!

JJ
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Old 05-28-2007, 01:15 AM   #6
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Thumbs up Re: Have SLE and NOT on Plaquenel??

JJ - I am currently on 30mg a day, but I was initially taking 60mg to begin with...I have had to deal with severe mood swings, severe depression, you name it, on the prednisone...I'm now on Zoloft, which has helped, but it took me a month and a half of begging my doctor for something to help counter the bad stuff before something happened that got everyone's attention. Besides the mood swings, depression, etc., I was also losing time, whole days as a matter of fact, where I would not remember ANYTHING that happened or took place...and during these 'blackout' periods my family have told me I acted like a robot.

During one of these I overdosed and ended up hospitalized for a week - I have absolutely no memory of this whatsoever, which is probably a good thing. It is something I never would have intentionally done - my family means the world to me and it sickens me that I have put them through this hell. Believe me, if not for the Zoloft, I'd be in a really deep dark pit right now - and we all know Lupus is hard enough to deal with as it is.

I will definately ask my doctor about the Plaquinel next time I see him - it's just I had noticed so many people mentioning it, yet it was something my doctor never brought up to me. Thank you everyone for your continued input and support - it's helped alot more then you know.
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Old 05-28-2007, 07:11 AM   #7
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Re: Have SLE and NOT on Plaquenel??

Hello there,

From jjcali.

"In case no one has warned you (no one warned me!) - prednisone can make you a bit crazy - like a meth addict! "

From raginstormcloud.

"I have had to deal with severe mood swings, severe depression, you name it, on the prednisone".

Whilst I think it is important for people to share their experiences of all medications, I also think I must give a personal view from the other side of taking steroids. I have been on them over 30 years, daily, in massive doses and in smaller reducing down doses and I have never experienced this kind of thing.

It is best to point out that for patients taking this type of medication for the first time that steroids "might" be responsible for some things but also that they "might" not cause any problems like this at all. It then gives a clearer picture for patients to decide whether or not they wish to proceed with this course of medications.

Of course many patients are also on other courses of drugs for other problems besides lupus and we all have to be so careful of interaction of certain things. Even when we have OTC purchases, we have to inform the pharmacist of all and every medication we are taking. For example, a simple cough linctus or headache pill can cause untold problems and hence the need to check on everything before purchasing any off prescription medications.

Just so long as we get the treatment that is right for us personally, and our medications adjusted accordingly then this is what is important I think.

I do hope that you get to feeling better soon. Take care.

goldenwings
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Last edited by goldenwings; 05-28-2007 at 07:15 AM. Reason: misspelling

 
Old 05-28-2007, 11:42 AM   #8
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Post Re: Have SLE and NOT on Plaquenel??

Goldenwings - you are correct - each of us is different and require different medications, and in that respect we all react or don't react to them, for that matter, differently. My personal experience with the prednisone has not been good, and most of the problems I have been having have been directly connected to the prednisone - however; because of my condition I have to continue taking it despite the side effects I've been dealing with.

That's part of the reason why I started this thread, wanting to find out about Plaquenel and why some take it and some don't, or why this could be.

I wish I could count myself as one of the 'lucky' ones that doesn't suffer side effects from medications - however, I'm one of those that tends to get almost all if not most of them. That's just the way it is though, I guess.
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Old 05-28-2007, 11:57 AM   #9
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Re: Have SLE and NOT on Plaquenel??

Oh rsc,

I do wish it was different for you. It really sucks when the thing that is doing us good also does us harm in its own way.

I know this from experience of steroids. I have lot of problems now that have been put down to the steroid intake for 30+ years. My parent, bless them, didn't have the option of anything but steroids when I was a child and first diagnosed. It was the best medication at the time for patients and in fact saved my life.

Of course it is so good now with so many different choices that are available for most lupus patients. I can only take steroids and methotrexate now as my long years of having lupus have taken their toll on my body.

I do count myself lucky though that I did/do not have the mood swings or depression because of it. Must be so hard for you and others who go through it.

I do hope things improve for you soon.

Take care.

goldewnings
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