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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 7/19/2016 9:29 AM (GMT -6)   
I don't post often but I do read daily. I love the support and knowledge found in this forum. I went back to my rhumy yesterday for a check in. A few months ago we changed my plaquenal to sulfasalazine. It seemed to help ease the pain dramatically. A few days ago I started to have the bad pain again and a lot of swelling in my hands and feet. Still don't have a real diagnosis as of yet. He keeps saying it is an inflammatory arthropathy which includes everything. Along with the medicine change, I have had more frequent migraines but less photo-sensitivity. He is not sure why my pain has been so bad the past few days (since Thursday) and wants me to stay on the medicine a few more months. He is very conservative since I also have ulcerative colitis. He did say I can take additional pain medicine on bad days but did not say what. I am just so frustrated since this has been going on for about a year seeking medical help. I also have dry eye and have noticed my eyes tear a lot more when the pain is bad. And my back gets very itchy. Weird! Thanks for listening. I just feel the need to vent to people who understand. My family is very supportive but don't fully understand. Plus my husband has his own health issues to deal with.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7475
   Posted 7/19/2016 1:07 PM (GMT -6)   
Interesting that you are taking sulfasalazine, even more interesting that it is helping you.

In the well known lupus book, "The Lupus Book", by Dr Daniel Wallace, (often referred to as the lupus 'bible'), he clearly states that many Lupus patients have a physical allergy to sulfa and sulfa-based medications. I certainly have the allergy, and I have known others that do as well.

I wonder if you may have a bit of this allergy, and that is contributing to your migraines? And maybe after a "few months' this is building up and contributing to the pain & swelling in your hands & feet? Just an idea, I really have no evidence to support this hunch.

Have you ever gotten a second opinion from another rheumy? I find it troubling that this guys is leaving you in pain with his only plan of action being "wait a few months". I wouldn't find that to be a very satisfactory treatment plan!

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 7/20/2016 5:05 PM (GMT -6)   
Thanks for replying. As far as I know I am only allergic to dogs, cats, trees and stuff like that. The sulfasalazine replaced plaqunal and liadia.

I have considered getting a second opinion. But I don't know where to go.

My pain had been so much better on the sulfasalazine until last Thursday. Now I do have a lot of pain. Maybe it is a flare? I don't really know enough about this disease to know for sure. I just feel stuck (like I am sure everyone else feels). The not knowing is hard.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal
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