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When I tried again this time, it took me 2 or 3 tries to get in.View Thread


SharonView Thread

I've also had an elevated anti-ds DNA that has gone back to normal.
According to my Rheum, labs can indicate what has happened in the recent past - even months ago - so are not a good indicator of current activity. She said you have to go by symptoms to determine how someone is doing right now.
I would get another opinion, honestly.
Good luck!View Thread

Thanks!View Thread

I will say that I also take Plaquenil, and have since summer of 2009. I've had no problems with it and am diligent about seeing my opthamologist every 6 months.
Like your daughter, I was started on the Plaquenil prior to a solid diagnosis. All of my autoimmune blood work was normal for quite some time. When I responded to the Plaquenil, it let my doctor know that he was on the right track, that I definitely had something autoimmune going on.
I also take a second antimalarial, since October. The meds help a lot with fatigue, joint pain, etc... In my opinion, the risks are pretty low and the potential benefits are substantial.
Good luck to you and your daughter.View Thread

I agree with Jessi: this forum needs more participants and more active participation. I spend a lot more time on the LFA boards than I do here (although I do try to check in once per day here). The fact is, other boards are way more active than this one - because they have more members and a lot of regulars. The handful of people here can't monitor this forum 24/7... On LFA, you can post a question or concern and have numerous responses within an hour.
Lupylisa also has a valid point: if the format is changing rapidly here (I've been here just a short time, so I'm unfamiliar with the changes that have taken place), people won't stay. I've been on the LFA boards since October 2009 and the format has not changed at all.
Btw - I don't mean to sound like I'm advertising for the LFA boards, or recruiting... I'm not. That was the first forum I joined after diagnosis and the main forum I participate in - I really have nothing else to use for comparison.
Other sites don't have the experts that you have here, which is a bonus for this site. I just think that people are looking for more interaction than they can get here.
SharonView Thread


Living With Lupus does not require a confirmation email to join, but LFA does.
@lupylisa - I mostly use Living With Lupus for chat - I have a lot of friends there. The LFA boards are the best I have found so far - a lot of active participation and a lot of the "regulars" stick around.View Thread
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Ha!