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Old 06-30-2007, 11:54 PM   #1
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want to know good stuff about plaquenil

To my shock and surprise I was diagnosed with Lupus on Wed. I am not shocked about having it just being diagnosed with it. I have seen my rheumatologist for five years and I guess she just thought it was time. Anyway, I'm scared to death to take plaquenil but I know that I probably should. She tried to put me on it two years ago even before she diagnosed me because she has always suspected lupus. I read somewhere on here that it helped with a persons irritable bowl, migraines, overactive bladder, and much more.

I am scared to death of weight gain and hair falling out. I have a tendency towards those things being that I have hypothryoidism and fine thinnish hair anyway. I know it's superficial things but it is still very bothersome for me. and could even add depression to my list of symptoms. Then I think if it could prevent organ involvment I'd be stupid not to take it.

Can somene share with me exactly what symptoms plaquenil has helped them with and if you don't have organ involvment (which I don't) can it prevent you from getting it in the future?

 
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Old 07-01-2007, 04:57 AM   #2
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Re: want to know good stuff about plaquenil

Aspen, Hi. I'm sorry you were Dx'ed but glad that you'll now get the treatment you need.

There are three classes of drugs used to treat lupus. If you borrow from your local library a hardcover, by either Dr. Daniel Wallace or Dr. Robert Lahita, you can read up on all three. Or try the SEARCH BOX above on each. But here are a few thoughts to get you started:

The mildest class is the *antimalarials*, which merely "modulate" the immune system, as opposed to out-and-out suppressing it. These are appropriate only if major organ involvement isn't present. Plaquenil is the newest & safest in the class. The drug helps with skin rashes, hair loss, mouth ulcers, joint pain & swelling, fatigue, etc. It takes perhaps 3-4 months to build up & reach full effect. GOOD NEWS: hair loss & weight gain are NOT associated with Plaquenil.

The other two classes are steroids & immunosuppressants, used where major organs are compromised. These types have a huge range of possible side effects---which is possibly what you were thinking of when you cited weight gain & hair loss. (But, hey, if I needed drugs of these types to save my life, I'd jump on them.)

I hope this gives you a head start & that others will chip in soon (I got up REAL early.) I hope you post more when you can, OK? Sending my best wishes, Vee
P.S. HANG IN THERE!

 
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Old 07-01-2007, 07:00 AM   #3
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Re: want to know good stuff about plaquenil

Hi Aspen...In answer to your question, I have been diagnosed Plaquenil(Name brand-Not the generic form) twice in my life, about 15 yrs ago for Sjogren's Syndrome-for about a year & then again last year when I was diagnosed with Lupus. Each time there was a noticable improvement with my energy level. Besides easing the fatigue it has helped decrease the dryness in my mouth. Also, since I have been on it again this last year my ANA(which was over 5,000) has dropped by more than half, and my rheumie was thrilled for me that I do not seem to need any stronger meds to treat the Lupus, at this time. So I highly recommend this drug for Lupus patients.
God bless you & keep your chin up!

 
Old 07-01-2007, 08:26 AM   #4
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Re: want to know good stuff about plaquenil

Hi, I've been on Plaquenil (400mg per day) for close to 3 years and it does help alot. They helped with my hair, my skin, and my joints. I do still get some flares, but they don't last as long and are no where near as severe. I started taking this the same time as Prednisone while in a bad flare...this way the Plaquenil built up in my system enough for when my pred was done (over 8 months of tapering).

This drug definitely does not cause weight gain or bloat, thank goodness! Steroids are what are infamous for doing that. I've seen some people say it causes stomach/gi problems, but I personally have had no side effects at all. And like Veej said, it's one of the safest long term drugs for lupus. The only issue could be it could cause eye sight problems in some, so you should get your eyes checked every year.

 
Old 07-01-2007, 10:43 AM   #5
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Re: want to know good stuff about plaquenil

Hi..
I was dx'd with lupus 4 months ago and started on plaquinil. For me it was a miracle. I feel SO much better and don't have any side effects. My rheumatologist told me that this drug has very minimal side effects. Except for an upset stomach for the first week or so I have only experienced good things with placquinil.... Like you I was shocked to get the diagnosis but also a little relieved to finallyfind out just why I was feeling so rotten. Good luck..
FYI... the placquinil can take up to 4 mos. to really kick in.
Kate

 
Old 07-01-2007, 08:47 PM   #6
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Re: want to know good stuff about plaquenil

I too have been on 400 mg of Plaquenil a day for 2 years. It took about 4 months for it to kick in, but I feel so much better. Like some of the others, I have a few flares, but not bad enough to keep me down. I just would be so afraid not to take it. I sure wouldn't want to feel like I did before the Plaquenil.

 
Old 07-26-2008, 07:29 PM   #7
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Re: want to know good stuff about plaquenil

I started on Placquinil one month ago and after two weeks thought perhaps I was having a placebo effect, but now I am convinced it is the Placquinil that has resulted in such a dramatic turn around in my health..........I am feeling 15 years younger! My fatigue is gone, joints feel great, my mind is quick and I am totally amazed at how great I feel! I was prescribed this by my rheumatologist for discoid lupus with Sjogrens and arthritis. I am praying that I can stay on this indefinately or until my immune system is regulated. ...I hope others have had similar experiences.

Last edited by barbararamm2; 07-26-2008 at 07:32 PM.

 
Old 07-27-2008, 06:33 PM   #8
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Re: want to know good stuff about plaquenil

Quote:
Originally Posted by kathryn+2 View Post
Hi..
I was dx'd with lupus 4 months ago and started on plaquinil. For me it was a miracle. I feel SO much better and don't have any side effects. My rheumatologist told me that this drug has very minimal side effects. Except for an upset stomach for the first week or so I have only experienced good things with placquinil.... Like you I was shocked to get the diagnosis but also a little relieved to finallyfind out just why I was feeling so rotten. Good luck..
FYI... the placquinil can take up to 4 mos. to really kick in.
Kate
Hi Kathryn, I was wondering how you got dx for lupus, what test you had psositive, and what were your symptoms. Thank you, Teresa.

 
Old 07-28-2008, 08:48 AM   #9
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Re: want to know good stuff about plaquenil

Read Dr Wallace's book. He has a whole section devoted to Plaquenil. It is a really safe drug in comparasion to the others taken for Lupus. It would be my first choice, but I had to go to the next step with an immunosuppresant. Dr Wallace will ease your fears. I still take Plaquenil and it hasn't given me any side effects woohoo!

 
Old 07-30-2008, 10:03 PM   #10
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Re: want to know good stuff about plaquenil

Sorry to be a party pooper here, but I have been on Plaquenil for 5 months and can't say I feel any difference at all. If anything I am sleeping all day but for just about 1 1/2 hours at a time. Never longer than 2, and my hips are hurting now and they weren't that bad before. I guess I am going to be one of the minority.
Cindy
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2005-current 5 joint surg, 3 organ surg, Lupus SLE, DDD, OA grade IV, Fibro, Hypoth, Breast Fibroids, Heart Ablation, Kid & Gallbl. stones, thyroid nodules, colon polyps, ovarian cyst, Kid and Liv dmg

 
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