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LPN
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Date Joined May 2011
Total Posts : 3
   Posted 5/24/2011 2:46 PM (GMT -6)   
Anyone been diagnosed with unspecified connective tissue disorder and prescribed plaquenil. 

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 5/24/2011 2:55 PM (GMT -6)   
Yes, quite a few of us.
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lucysgd
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Date Joined Jun 2008
Total Posts : 675
   Posted 5/24/2011 11:05 PM (GMT -6)   
Yes - I've been taking Plaquenil for just over 2 years.  It took awhile to feel the positive effects, but it seems to be keeping things in check, at least compared to life without it.
 
Welcome to the forum, LPN - there are several UCTD'ers here.
 
Lucy

LPN
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Date Joined May 2011
Total Posts : 3
   Posted 5/25/2011 8:16 AM (GMT -6)   
Thanks for the responses and it's great to know I'm not the only one. One of my biggest concerns with this disorder is the lack of knowledge around it. No one seems to know what's going on with this or what the future holds. I know no one else with this disorder. Lucy, I'm so glad to hear the Paquenil has worked for you, for more than 2 years. I to, have been taking it for about that long. At first, I described it as my new best friend, but of late...my friend is letting me down. My Doctor does not want to increase my dosage, because of side effects, but maybe a few side effects is better than the increase in pain and fatigue. Has anyone taken any other Drug for this?

lucysgd
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Date Joined Jun 2008
Total Posts : 675
   Posted 5/25/2011 1:03 PM (GMT -6)   
LPN - it's interesting you're feeling Plaquenil isn't working as well for you, lately.   As I said, it seems to be keeping things in check, compared to life without it, and while that is true - I wish it was working a little better, and have been wondering myself about whether I shouldn't be taking something else.  I don't think a higher dosage of Plaquenil is worth the risk, or is one doctors are comfortable with.  It would seem MTX is the usual next step.  And I don't know if I want to do that, either.
 
I can tell you that last year, I cut my dose of Plaq in half (going to 200 mg per day instead of 400mg).  This was on the advice of a former rheumy who felt my symptoms/problems were falling more into the fibromyalgia category.  I was happy to follow that advice, feeling that it had stopped working as well as it did initially, and hey - I'd rather "just have fibro" than a connective tissue disease to on top.  The flare that I experienced after about 4-5 weeks of only 200 mg a day was not pretty.  I knew then, that the Plaquenil had been doing far more than I was aware of.  I went to a new rheumy (head of dept. at teaching hospital) and he told me it would have taken about that long (5 wks)  for the Plaquenil to be out of my system, and that I needed to get back on the 400 mg and stay on it.  We just keep monitoring and watching.....and waiting, I guess.
 
It is frustrating to have solid answers remain out of focus.   I had a rheumy tell me it's like there are three CTD's circling overhead, and we just have to wait and see which one(s) actually "land".   All the while, of course, the body feels like a crash landing anyway!
 
Lucy

lucysgd
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Date Joined Jun 2008
Total Posts : 675
   Posted 5/25/2011 1:58 PM (GMT -6)   
I should have said 5 weeks before the full effect of the reduction in Plaquenil would be realized, not till it was out of my system - because, obviously - I was still taking the 200 mg.  Foggy brain day...
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