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Wondering About Plaquenil

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#1 Newdaye33



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Posted 17 May 2007 - 09:58 AM

I've had Scleroderma for about 4 years and was initially (and briefly) put on a certain joint pain medication. Since then, I haven't used any medication. I have Raynaud's and some skin tightening, (def. no wrinkles! (smile), and my fingers are slightly curved- but no more joint pain. My new Rhemmie suggested Plaquenil and when I pressed her for answers (will my fingers straighten? does this mean it won't progress any further?) She replied that Plaquenil is like "Vitamin E" and overall it could do me some good. She added that most of her patients are also on Plaquenil. To say the least, I'm still not convinced. I also have Type I diabetes and wear an insulin pump. I have a toddler at home with me and want to be well to be there for her, but I just don't know enough about Plaquenil to justify taking "another medication". I've read somethings about it, but not much when combined with SD. Is it beneficial for people with SD who don't have joint pain? Are there any long term side effects? Any info would be helpful!


#2 Sweet


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Posted 17 May 2007 - 10:55 AM

Hi Michele and welcome to the sclero forums. I'm sure sorry to hear you have scleroderma.

Plaquenil is a wonderful medication. It's really the first line of defense for many. The way my rheumatologist described it to me, is "It will help A LOT with your fatigue and your pain, it also slows the progression of the disease down and in some folk can stop it in its tracks" I've been on it for 7 years now, I tried to go off of it twice and reduce my dosage one other time to find out I could hardly get out of bed due to pain and fatigue. It has worked wonders for me and I would recommend it.

Please let us know what you decide to do. We're here for you!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 kelowna52


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Posted 17 May 2007 - 11:30 AM

Hello Michele, I have been on Plaquenil, for I think, about 6 years now. I think it's a wonderfull medication, great for body pain. I also tried going off of it and the body pain came back big time, so I went right back on it. I have my eyes checked every six month's because it can, in rare cases affect your eye sight. I think the good outway the bad as far as this medication goes. I still have some body pain, but I can not immagine how bad it would be without this medication. Take care and good luck to you.

Jackie S.

#4 Heidi


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Posted 17 May 2007 - 02:38 PM

Hi Michele,

Welcome to the forums! I am glad you have found us, but sorry it is because of your scleroderma. I have been taking Plaquenil for about 4 or 5 years now and it has been a wonder drug for me. It helped so much with my fatigue and all over body pain. It took about 6 -8 weeks to work and then it was only very gradually that I noticed an improvement. I have read that Plaquenil is a DMARD (Disease Modifying Anti-Rheumatic Disease) and that it works by decreasing internal inflammation. In general, I am very sensitive to medications and almost ALWAYS get side effects of any medication I am taking....and haven't had any with the Plaquenil.

I hope this has helped. Again, welcome!

Warm wishes,

#5 WestCoast1


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Posted 17 May 2007 - 03:47 PM

Hello Michele,
Welcome to the forum! As the rest of these folks have said, Plaquenil does do good things for RA type symptoms such as body pain and fatigue.

I would'nt be too worried about Plaquenil, if your Doctor wants you to start it in order for you to get some relief. However if you don't have any joint pain than I am not sure why the Dr. would prescribe it for you.

Here is a link from the ISN that list some good information about Plaquenil. Hydroxychloroquine is the generic name for this medication.


#6 jefa


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Posted 17 May 2007 - 08:14 PM

Good information, Erin. My doctor and my first rheumatologist argued about Plaquenil/hydroxychloroquine. The rheumatologist viewed it as a harmless way of diagnosing rheumatoid arthritis symptoms. He said that it works for some people and doesn't work for others, but if it did work, it was a lot safer than the next line DMARDs such as methotrexate. He said while it works on inflammation, they are not sure exactly HOW it works. My general practitioner agreed reluctantly but at the first sign of visual problems (I was seeing light flashes and had a grey rectangle cloud appearing in front of my eyes) he made me stop taking it. The symptoms showed up before I had taken it long enough to know if there was any benefit -- after about a month. The visual problems went away immediately when I stopped taking it.

By the way, welcome to the forums, Michelle. As you can see everyone here is really good about sharing their experiences and information. While many people on the forums (as you can see from the answers in this thread) have found relief from Plaquenil, it is good to understand the risks before making a decision with your doctors about any drug.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 susie54


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Posted 18 May 2007 - 12:22 AM

I couldn't make it without Plaquenil. It has been a wonderful drug to keep pain and fatigue under control. It takes a couple of months to kick in but for three years , I have been very pleased. TWO THUMBS UP!!!!! Susie54