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docmartenmom

Plaquenil Anyone?

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Hi Everyone,

 

The rheumatologist I saw in New York City prescribed 200 mg/daily of Plaquenil for me as I await my diagnosis. She suspects if I do not have systemic sclerosis, I may have connective tissue disease, since I already have Fibromyalgia, Sjogren's and Raynaud's as well as intestinal damage. Either way, she felt that I need to start Plaquenil and said it takes 3 months before I start to feel it working.

 

Have any of you benefited from Plaquenil?

 

Thanks for your input ,

 

Lori

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Hi Lori - I take Plaquenil (200 mgs). I have been on it for several years. At first I didn't think it was doing much but one day I just noticed that the nerve pain I experienced had lessoned quite a bit. I still get flares from time to time but in general I think this medication is wonderful. I hope you feel some relief very soon. -Ann

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Hi Lori,

 

I'm on Plaquenil 200mg twice a day and I'm with Ann, I love the stuff. It does make a tremendous difference to me. Of course, everyone is different, but I think most people have a good experience with it. It does take a while to kick in fully. You might think it isn't working but one day you'll suddenly notice that you haven't noticed the pain/fatigue quite so much, if you know what I mean. Another good thing about it is that it is available as a generic, which helps keep the dreaded co-pays down.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I have been taking it too for about a year now. Make sure to have a visit with an opthomolgist prior to starting it and regularly after that as it can very rarely effect vision. My doctor say in the many years he has checked people taking this drug, he has only seen one case where there was a problem.

I reduced my fatique quite a bit. It helped with other symptoms too.

So far, it has been the most helpful thing I have done.

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Hi Lori,

 

I don't take Plaquenil myself, so can't advise you from my own experience, but we have another thread HERE which I hope you'll find informative and interesting.

 

I do hope that you soon begin to reap the benefit that the other members have described.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Lori,

I have been on Plaquenil for 2 years and love it. I noticed a reduction in my fatigue after taking it for about a year. Give it some time and of course keep in touch with your doctor about any new symptoms or adverse reactions. This disease is nothing if not very individualistic. How it manifests in you will really depend on you and how you respond to the meds will really be just about you. It is kind of aggravating to not be able to "know" what will come next, but that is the deal with this disease. Good luck and keep us up to date how you are doing.

Jill

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I have been considering talking to my rheumatologist about starting plaquinil and I am now definitely going to do so. I see him in March and will be asking to start it then, mind you I see my cardiologist in February, I wonder if he would prescribe it? The article just posted by Craig says that cardiovascular effects of antimalarials has now been shown.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you, every single one of you, who posted your thoughts and links - I am officially starting it tomorrow evening before bedtime as suggested. I was told it takes up to 3 months before it begins to work, so I am keeping my hopes up for me and for all of you out there :)

 

Thanks again - I feel better about taking it now!

Lori

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The effects of plaquenil for me are mild but every little bit helps.

 

For me it really helps with the swelling and some fatigue but not much.

 

The first time I took the generic drug I got a weird reaction about a month in.

 

I got dinosaur hands, basically a weird rash of bumps like dinosaur skin. It lasted for about 2 weeks, and my doctor switched me to the brand name which I took for about a year. Then after taking some time off, I am back on the generic so we'll see what happens now.

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