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Old 05-16-2007, 05:33 AM   #1
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Join Date: Oct 2006
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Dizzywinkle HB User
Cool hello and plaquenil

Hey guys, first time on these boards, well these one anyway!! I have had lupus for 20 years, in remission for 12 of those which was fabulous.. seems like I am possibly having a fare, despite all the bloods being negative I have lupus like symptoms. I wanted to check in with you if these sound familiar. I know it sounds strange but I had such a bad time first time round I've kind of blanked out how it was and I don't really remember if I had these first time around! I had really bad cold, flu like symptoms over xmas which wiped me out, got thyroiditis and laryingitis twice.. could hardly move I was so tired. Then about six weeks ago, I got really bad pain all over my body from my toes right up to my head, really bad pain in teh muscles, joints, oh boy was it bad but no obvious inflammation. Really nauseaus, headaches, dizziness, more than I normally have (I have a balance problem to boot!) and so tired. Poor appetite (although funnily enough not for chocolate I have no rash this time though. The doctors thought at first it was viral, I wondered fibro as my mum has this. anyways they are suggesting going onto plaquenil to see if this will boost my system. I was on steroids first go round. I was just wondering does this sound like your symptoms and if you are on plaquenil how long does it take before you notice any difference? Always hoped I'd never be here again but now that I am I'm thrilled that 20 years on boards like this exist, and I can share with you all on here.. x

 
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Old 05-18-2007, 10:06 AM   #2
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nita45 HB User
Angry Re: hello and plaquenil

My daughter has been on plaquenel for 4 years now, and it is an ok med. The only thing is I would say have your eyes checked yearly because it does effect your eyes. My daughter is also on prednasone and we are trying to go off she has finally made it to 1mg has gained 60lbs and she has been on it for 4 years and her daughter was not planning on taking her off we had to change doctors. I would never tell any one to take pred. it does what it is so suppose to do, but the side effects are horrific, and not worth your life even though it has saved lives. I would say never start it. My daughter is suffering tremendously because of it.:

 
Old 05-18-2007, 03:10 PM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: hello and plaquenil

Hi, DizzyWinkle. I was told Plaquenil could take as long as 3 to 4 months to reach its maximum effect.

About Plaquenil & eyes: My rheumatologist, in a large big-city teaching hospital practice, told me it's rare & that he'd NEVER seen a case of Plaquenil-induced eye damage. Further, in the very RARE instances Plaquenil does cause build-up damage, the damage is *reversible* when the drug is discontinued.

To read more, you could try Dr. Daniel Wallace's lupus hardcover, available in most libraries & bookstores. He writes at length about it, and I found that section helped tremendously in allaying my own concerns. I have my eyes checked twice yearly.

Plaquenil has made a huge difference for me. I hope this gives you some ideas for reading & discussion with your dr. I hope you let us know how you're making out. Take good care & good luck! Sincerely, Vee

Last edited by VeeJ; 05-18-2007 at 03:11 PM. Reason: typo

 
Old 05-18-2007, 07:31 PM   #4
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Join Date: Apr 2006
Location: Ohio
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watoozie HB User
Re: hello and plaquenil

I've been on Plaquenil for two years and it has helped me also. I would be afraid to be without it!! I go to my eye doctor every 6 months and he said he has never had even one case that the Plaquenil caused any problems. It took me about 4 months to really feel like it was working, but oh boy how much better I felt then. I take 200mg twice a day. Good luck, hope you start to feel better soon.

 
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