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Old 12-25-2009, 12:50 AM   #1
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Take Plaquenil if few clinical SLE symptoms?

Hello,
I am wondering about the best time to go on Plaquenil. I was diagnosed with apparent SLE about a year ago. My symptoms included transient lymphadenopathy and chronic, "mild" acid reflux/gastritis. Taking 20 mg. Aciphex once a day for that.

I may or may not have the malar pinkness lupus rash as I was diagnosed with rosacea years ago. I am extremely fair skinned and spicy foods, heat, hot water, stress, cold wind, sun, etc. all cause pinkness in the malar area. But then it mostly goes away when those triggers are gone (within minutes typically).

I have never had fatigue, joint pain/weakness, kidney issues, etc. But I do have persistently slightly low C4 levels. I am ANA positive with nucleolar and also homogeneous patterns. (but highly nucleolar) Also, I'm anticardiolipin positive, but no clots to date. I'm on 81 mg. aspirin a day for that. I have positive anti DS-DNA levels that have risen consistently since I have been tested, but they're below 50.

My rheumatologist has not recommended I go on Plaquenil yet because she says that doctors don't treat labs. They treat symptoms, ie. if I had no positive labs, but had the other symptoms, they'd treat me. Has anyone been in this situation? I don't know what to do. I'm worried about going on a serious medication for the rest of my life, but if it could potentially help prevent any flares, then of course, I'd like to consider it. Looking for any advice you would like to offer. Thanks! Happy Holidays!

 
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Old 12-26-2009, 04:56 AM   #2
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Re: Take Plaquenil if few clinical SLE symptoms?

Thinkfast, hi. How long has this been going on? Isn't lymphadenopathy indicative of a malfunctioning immune system, at least somewhat?

For the record, I don't think Plaquenil is really considered a "major med", at least not in the sense that steroids and immune suppressants are "major". Unlike those other two classes of meds, it modifies but does NOT suppress the immune system. The "sticky posts" contain reading resources. Have you checked them out to see what the *top* rheumies say about its safety & how valuable it is in keeping lupus in check?

In your shoes, I'd go for a 2nd opinion. I hope others chip in soon. Best wishes, Vee

 
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Old 12-26-2009, 05:56 PM   #3
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Re: Take Plaquenil if few clinical SLE symptoms?

I'm glad to hear that one doctor actually states he treats the symptoms not the labs. Many lupies complain that their doctors are waiting for labs to change before treatment.

I agree with Veej that a second opinion might be helpful. If you had symptoms such as fatigue and joint pain I might vote for plaquenil but I'm not sure what good it would do without those symptoms.

 
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Old 12-27-2009, 10:20 PM   #4
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Re: Take Plaquenil if few clinical SLE symptoms?

Quote:
Originally Posted by VeeJ View Post
Thinkfast, hi. How long has this been going on? Isn't lymphadenopathy indicative of a malfunctioning immune system, at least somewhat?

For the record, I don't think Plaquenil is really considered a "major med", at least not in the sense that steroids and immune suppressants are "major". Unlike those other two classes of meds, it modifies but does NOT suppress the immune system. The "sticky posts" contain reading resources. Have you checked them out to see what the *top* rheumies say about its safety & how valuable it is in keeping lupus in check?

In your shoes, I'd go for a 2nd opinion. I hope others chip in soon. Best wishes, Vee
Vee,
Thank you very much for your thoughts. Yes, I agree that transient, unexplained adenopathy could be due to immune system issues. Mine comes and goes for no "apparent" reason and hasn't caused any "known" problems. So the docs have not been too concerned about that.

I have checked several sources about prescribing Plaquenil, but I keep getting conflicting opinions. I'll be sure to check more about the stickie posts, too. I am changing health insurance plans in January and so will be getting second opinions as I'll be having all new doctors! Will see how that goes and if these doctors recommend more aggressive treatment.

Thanks again for your support. Hope you are feeling well.
Thinkfast

 
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Old 12-27-2009, 10:22 PM   #5
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Re: Take Plaquenil if few clinical SLE symptoms?

Thanks, Heidi.

I have heard some reports from some doctors that they prescribe Plaquenil to potentially help with preventing blood clots, something I am at risk for due to having the anticardiolipin antibody. Also, it may help prevent a flare.

I am going to get some second opinions soon. Thanks for your thoughts!
Thinkfast

 
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Old 12-28-2009, 02:13 PM   #6
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Re: Take Plaquenil if few clinical SLE symptoms?

Hello Thinkfast I am new to this site but not to lupus. I have had it since 2005 well it was discovered than. The Rheumatologist I see advised after hearing my history of out breaks with skin and joint issues,even my acid reflux and IBS feeles this was all to lupus and my ana testing always came back positive. The other Drs I seen blew it off as thyroid condition. Untill I has a bad out break on my skin from head to toe including shingles. The Dr put me on plaquinel right away and said I will be on it for the rest of my life. Now I take prednisone if I have a flare up which sometimes can happen but nothing like I had. The Dr states the plaquinel is one of the best drugs to help keep lupus under control. If your Dr does not want to put you on this you could try another Rheumatologist. I have met alot of people now with this and they all seem to be on some kind of medication to try and prevent flare ups. All the issues with your skin the sun the cold all are part of this. I get out of the shower and my whole body is bright red just from the water than it goes away. Well good luck on your decision for the plaquinel Iam glad am on it

 
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Old 12-28-2009, 02:17 PM   #7
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Re: Take Plaquenil if few clinical SLE symptoms?

Quote:
Originally Posted by jlfrrll View Post
Hello Thinkfast I am new to this site but not to lupus. I have had it since 2005 well it was discovered than. The Rheumatologist I see advised after hearing my history of out breaks with skin and joint issues,even my acid reflux and IBS feeles this was all to lupus and my ana testing always came back positive. The other Drs I seen blew it off as thyroid condition. Untill I has a bad out break on my skin from head to toe including shingles. The Dr put me on plaquinel right away and said I will be on it for the rest of my life. Now I take prednisone if I have a flare up which sometimes can happen but nothing like I had. The Dr states the plaquinel is one of the best drugs to help keep lupus under control. If your Dr does not want to put you on this you could try another Rheumatologist. I have met alot of people now with this and they all seem to be on some kind of medication to try and prevent flare ups. All the issues with your skin the sun the cold all are part of this. I get out of the shower and my whole body is bright red just from the water than it goes away. Well good luck on your decision for the plaquinel Iam glad am on it
Thank you for your feedback. It seems a lot of people who have had unpleasant lupus symptoms do recommend being on Plaquenil. Interesting that your doctor thinks your stomach issues are due to the lupus. My doctors have typically thought my stomach issues were due to stress.

Hope you are doing well.
thinkfast

 
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Old 12-28-2009, 05:15 PM   #8
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Re: Take Plaquenil if few clinical SLE symptoms?

If we are women with symptoms it must be stress

 
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Old 12-30-2009, 12:33 PM   #9
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Re: Take Plaquenil if few clinical SLE symptoms?

I just started the genereic plaquenil and was wondering if when you started on it if it causes you to be drowsy and fuzzy? I also read online when i looked up the drug that it has a pain reliever in it. And i also take tramadol and i was concerned when i took it yesterday i felt really drugged. I am waiting for Dr. to call me back had questions about this. That maybe i shoudn't take it during the day but at night.

 
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Old 12-31-2009, 02:28 PM   #10
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Re: Take Plaquenil if few clinical SLE symptoms?

Hi , I also take the genereic brand plaquenil, I don't remember getting drowsy or fuzzy, but I still get a strange feeling in my chest not long after I take it, and than it goes away. I just tell myself to deal with it as its better than what was going on befor. I take two aday one in the morning and one at night. But if you are feeling fuzzy and drowsy you want to check with our doctor. Everyone is differant and their bodies react differant, but like you said your on tramadol, it better to check it out. I meet so many people with lupus or people that know someone with it. Its like more and more people are getting it. My doctor even said it can be passed on to our childern,and it usually affect women not men. Well I guess I said enough I hope you get the information from your dr. soon Good luck

 
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Old 12-31-2009, 05:21 PM   #11
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Re: Take Plaquenil if few clinical SLE symptoms?

Hi Thinkfast
I've been on Plaquenil for over a decade. I have fatigue and joint pain and the plaquenil along with celebrex helps me with my Lupus symptoms. I agree that a second opinion would be in order. I also agree that it's good to have a doctor that treats symptoms and not labs. It took me 4 rheumatologists to find one that does that because in my case, I had lots of symptoms but my labs lagged in proving that I had Lupus. It took me 4 years to be diagnosed because of my labs not substantiating my symptoms. I understand your concern with regard to taking Plaquenil, but if it were necessary to treat your Lupus then you always have to weigh the risks and benefits. I personally have never had any problems with Plaquenil but when you take this drug they want you to get special eye exams every 6 months because there is a small risk of retinal damage referred to as Plaquenil Toxicity and it is a rare entity. I do get regular eye exams every 6 months. I hope this helps...good luck and go for a second opinion, it never hurts to do so. Happy New Year

 
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Old 12-31-2009, 05:29 PM   #12
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Re: Take Plaquenil if few clinical SLE symptoms?

Dear Fibro-Worn and jlfrrll,
I have been on Plaquenil for over a decade. I have to take the brand name Plaquenil. The reason being is that most generics do not have to protective coating which makes it easier on the stomach. The brand does have a protective coating. I take prilosec for GERD and because Plaquenil and Celebrex are hard on the stomach. Anyway, what I want to point out is that the generic may be irritating your esophagus on the way down and causing pain. See if you can possibly try the brand name Plaquenil and if you do not get those symptoms. Additionally, generics only have to be 80% effective in order to be approved by the FDA so they don't always work as well on everyone. I hope this sheds some light on the topic for you.

 
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Old 01-01-2010, 09:44 AM   #13
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Re: Take Plaquenil if few clinical SLE symptoms?

mammacook
Does plaquenil the brand is it very expensive?

 
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Old 01-01-2010, 12:32 PM   #14
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Re: Take Plaquenil if few clinical SLE symptoms?

fibro-worn,

I honestly don't know if it is. My Rx plan covers both brand and generic, I just pay a higher copay for brand names. They always like to fill it with generic, but now I include a note along with my Rx that has been noted with DAW by the doctor, and they do fill it with the brand. Plaquenil is harsh on the stomach just like NSAIDS and aspirin is, and the brand name has the coating. When I took the generic Plaquenil, I would keep getting heartburn and was nauseous even though I was taking Prilosec, then I realized it was the Plaquenil and I no longer have any problem taking it.

Maybe you could talk to your pharmacist and see if he could possibly get you a generic for Plaquenil that has the protective coating. When I first started taking the Plaquenil, it was filled generically by my mail away pharmacy. Then they changed generics and that's where I began to have problems. The new generic didn't have the coating. From my experience, there are generics that have the coating, so I would recommend asking your pharmacist about that if the brand is too expensive.

 
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Old 01-02-2010, 11:11 AM   #15
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Re: Take Plaquenil if few clinical SLE symptoms?

Hi Fibor-worn I just wanted to let you know that I pay for my medication out of pocket as I had lost my job and insurance. I always used the generic brand with insurance and my Plaquenil always came coated and still does. The company's name that makes the brand I take is Watson and I pay 46.99 a month for mine. But as I said I always used generic and I always make sure I take my medicine right after I eat in the morning, and right after dinner. My dr. advised me to as he said it could cause a stomach issue. And I have been doing this way for almost 5 yrs. But everbody is differant and so are our systems. Check with the company you get your meds from and ask if they have it coated in generic. Hope it works out

 
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