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Old 09-27-2002, 12:07 PM   #1
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Post Refusing to take Plaquenil

I saw my rheumy for the first time in 2 years about 3 weeks ago. I got my blood work back 2 weeks ago and everything looks great. He is determined that I should be on plaquenil. I was diagnosed back in January of 1998, took Plaquenil for 6 months and decided to take myself off of it b/c of the adverse side effects. I have been in remission 2 times since I've been off the plaquenil. The only symptoms of lupus that I have is fatigue, hair loss, alopecia and mild brain fog. My lupus was found through blood work, not symptoms. My point to posting this is that I refuse to take this drug b/c my doctor cannot convince me to take something that will take approximatley 3-6 months before I will notice anything and that damages the retina in my eyes when the treatment I currently provide myself has proven to be effective. I just wanted to know if anyone else has decided against their doctors wishes to not take it. Thanks!!

 
Old 09-27-2002, 08:40 PM   #2
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Unlike you, I had exteme lupus symptoms when I was diagnosed. It's been 3 months since my diagnosis. I am now weaning myself off prednisone, I'm on 1 mg now. The doctor that diagnosed me has wanted me to go on Plaguenil 2 wks after I was diagnosed. I told him that I'm trying to build up my immune system, and don't want to take an immune suppressive drug. I am also going to an acupuncturist and taking chinese herbs. I get the feeling that he must be getting some kind of kickback from the drug company, as much as he's pushing me to take this drug. I say, stick with your intuition, if you don't have to take it, don't.

I'm not a big fan of western medicine, and this experience has confirmed my beliefs in what I think of it. I continue to see an overall improvement in how I feel, and also want to know what the lupus is doing to my body and not confuse it with the side effects of a drug-that like you said, takes 3-6 months to work.

Hang in there.

 
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Old 09-29-2002, 09:04 AM   #3
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My symptoms are like a moderate roller-coaster. I've never been hospitalized for it (and they'd have to take me kicking and screaming). I refused to start prednisone because I felt like it was a drastic step to take when my flares were intermittent and more related to infections (ears, uti's, viral pneumonia...). It was the right choice for me, as well as changing to a doctor that respected the fact that I was at least an equal partner in the care of my body. I did take Plaquenil for a year and didn't notice any improvements, although some things became a little worse - fatigue, blisters - but I can't say for sure that it was correlated to the med. I chose to get off it a few months ago. If Lupus rears it's ugly head in a major way, I won't hesitate to try again but I just don't see the need to take it when I seem to be ok. (Although the doc said I'd be a lot worse off if I stopped - so we'll see)

Plaquenil has worked wonders for a lot of people. Keep an open mind - the retinal complications are extremely rare - my opthamologist said that it takes years of being on it to really be a "candidate" for the complications and even then, it's a a minimal occurance. I think we're more likely to get hit by a car than have the retinal probs.

Don't write any treatment off until you get a complete picture of it. I think it's awesome that you're taking an interest in your care - but be open and willing to give things a shot. Maybe negotiate with your doctor to try it for 6 months and see what happens?

 
Old 09-30-2002, 12:02 AM   #4
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Hi, and i take plaquenil have for 7 years had no trouble with eyes:-) its only in one percent that cause eye damage. To me it took about three months to feel better but it depends on each person good luck with what ever you do.

Rose

 
Old 09-30-2002, 11:21 AM   #5
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I was diagnosed with Lupus six years ago. I had a
bad flare right before I was diagnosed but it let
up some by the time all the tests were back. I felt
bad for a long time but my Dr. supported me on no meds.
I would only take meds if there was dangerous internal
organ involvement. The best medicine for Lupus is
rest and relaxation techniques. I changed my life style, lessened the stress.
I take better care of myself and stay out of the sun.
The problem with taking meds is it seems that the
body is better off and more likely to stay in remission
if it goes in by itself and not forced by meds. The body seems to need more and more meds with every flare
once you are on them.
Dr's are not taught to let the body heal itself only to
fix it with a pill. And lets face it that's what most patients want too even though long term it might not be the best thing.

------------------

 
Old 10-01-2002, 11:58 AM   #6
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I have been on Plaquenil for 18 months....it took about 4 months to start helping , but I would not ever want to go without it...I could barely walk, pain in joints etc....pain in feet, legs ached all the time. The med did wonders for me....my dr has me get my eyes checked every so often , but says it is rare for any problems. For me this medicine is a miricle drug. I have 5 kids and couldn't do the things i needed to do before, now I feel so much better as far as joints. I still have hair loss, rashes, mouth sores, etc but i feel like my age....33 instead of 85! I ran out of my medicine for the first time last month...for 10 days....all of a sudden the joints in my right foot were swollen, could hardly walk on it and my knee was so stiff it wouldn't bend....boy did I get to the pharmacy quick...it took 4 days but I got better and have been fine since. I have a wonderful lupus specialist in Birmingham Alabama and they have been very good to me. Since I'm on Plaquenil I hardly ever have to take the Naprosyn etc. Good luck to all.
Donna
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Donna

 
Old 10-04-2002, 11:38 AM   #7
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I've been using plaquenil for about 16 years, and I have had no problems what so ever but I don't take it every day just every other day. It helps...keep an open mind.

 
Old 07-01-2008, 10:30 AM   #8
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Re: Refusing to take Plaquenil

Yes, I reluctant to take Plaquenil due to the side effects - eye problem and hair loss. I went to 3 rheumatologist and got 3 different diagnosis - lupus, alopecia and Sjorgen's syndrome. My ANA test came back very high and all 3 rheumatologists suggested I take plaquenil for my hair loss, the only symptom I have. Some part of the hair are gradually growing back but continue to have hair loss.

I was wondering if anyone have taken plaquenil for hair loss? If yes, what's the outcome?

Thanks.





Quote:
Originally Posted by RedOnTheHead View Post
I saw my rheumy for the first time in 2 years about 3 weeks ago. I got my blood work back 2 weeks ago and everything looks great. He is determined that I should be on plaquenil. I was diagnosed back in January of 1998, took Plaquenil for 6 months and decided to take myself off of it b/c of the adverse side effects. I have been in remission 2 times since I've been off the plaquenil. The only symptoms of lupus that I have is fatigue, hair loss, alopecia and mild brain fog. My lupus was found through blood work, not symptoms. My point to posting this is that I refuse to take this drug b/c my doctor cannot convince me to take something that will take approximatley 3-6 months before I will notice anything and that damages the retina in my eyes when the treatment I currently provide myself has proven to be effective. I just wanted to know if anyone else has decided against their doctors wishes to not take it. Thanks!!

 
Old 07-01-2008, 01:15 PM   #9
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Re: Refusing to take Plaquenil

I've been on plaquenil for a year ,and it has helped me tremendously. I'm not worried about the eye thing as my Dr. said it's very rare. I do know that some people are allergic to the generic brand of plaquenil ,and not to the real thing.
I also use alternative treatments like acupuncture, and herbal remedies for sleeping. Also deep breathing and visualization techniques for pain control. Next week I have an appt with a Dr. who does Nutriotional Muscle Testing. I think a mix of both works best for me

Kate

 
Old 07-01-2008, 05:18 PM   #10
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Re: Refusing to take Plaquenil

I started on plaquenil but I did have what was thought to be an eye reaction. I was probably on plaquenil for a 18mo.to 2yrs. and it did help. However I 'flunked' one of my visual field tests and the opthomologist felt it was from the plaquenil. I was sent to the university medical center for some very funky eye tests done with tiny little electrode wires in your eyes. You couldn't feel them, but the test took forever. The general consenses of opinions was it was just my weird eyes and not the plaquenil, but my rheumy refuses to put me back on it. I take prednisone and I do very well on that.

I am an advocate of taking as little medication as possible. I think it is an individual decision on comfort level and how you can manage your pain. I personally have to have the immuno suppressants for the joint pain, otherwise I couldn't manage to get around. I think it is great though for those that can manage without them to make the choice.

Glojer

 
Old 07-01-2008, 05:53 PM   #11
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Re: Refusing to take Plaquenil

Camur, I've been on Plaquenil for 8 yrs, and it has helped me a lot---including helping my poor hair. I'd had breakage (no bald spots); also anemia, joint pain, fevers, fatigue, GI & urinary problems, migraines, etc. I've been very grateful for it, as it's enabled me to avoid steroids. Plaquenil's possible side effects are actually considered mild compared to the range, frequency & severity of problems steroids cause---which is why it's the DOC for those without major organ involvement.

And as is the case with all drugs, because you *can* have side effects doesn't mean you *will*. I adjusted very quickly to the drug. I had only a bit of a halo effect driving at night, which disappeared quickly.

Are you positive for anti-Ro? I wondered because you cited Sjogren's. I was also, but I have only lupus.

Anyway, my rheumie's practice is large, in a huge metro area; and he told me they've *never* seen a case of Plaquenil-induced eye damage. (But I have my eyes checked every six months, because he requires it.)

FYI, Dr. Daniel Wallace writes about Plaquenil in his lupus hardcover, available in most libraries & bookstores. It's a "pet peeve" of his, he says, that so many drs. fear Plaquenil eye damage. The stats don't support that level of concern, is his bottom line---PLUS, damage, while rare, is almost always REVERSIBLE if the drug is discontinued. In contrast, the OLDER-generation antimalarials, before Plaquenil, did indeed cause irreversible damage. Dr. Wallace also explains that Plaquenil works by altering cell acid-to-base ratio, which somehow quells auto-antibody production. And, obviously, reducing autoantibody production is essential in keeping your disease under control.

I hope something here is useful to you. Take good care & good luck! Sincerely, Vee

 
Old 07-01-2008, 08:26 PM   #12
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Re: Refusing to take Plaquenil

Here's my 2 cents...

My rheumy told me that plaquenil is much more likely to cause retinal damage if you're on an incorrect dosage for your weight. That is to say, it becomes toxic if it builds up in your system due to an "overdosage" for your weight. I personally, although not a medical expert, have had good results from using this drug, and I make sure I get regular checkups with the eye dr (which includes him taking a "picture" of my retinas for reference to see if there are any changes from checkup to checkup). Go with your gut, but as for me, I have no misgivings about taking plaquenil.

Michelle in CA

 
Old 07-14-2008, 10:48 AM   #13
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Re: Refusing to take Plaquenil

If your doc recommends you take plaquenil, I would take it.
I was on it for years and then decided to stop it because I could manage without it..But, guess what. I have had several severe flares that have done more damage to my organs..should have just stayed on it. I was trying to do it naturally via herbs/supplements etc but that just doesnt cut it when your dealing with autoimmune..it has a mind of its own.
Im going to try and get back on it. It can be hard on the tummy at first, but I think starting with a low dose might help.

Just my opinion..

Rachelle

 
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