Plaquenil is effective for Lupus patients, as well as people with UCTD (described to me by a rheumatologist as "Lupus-like" or "Lupus-lite" or "mild Lupus"). So it's very possible to be on Plaquenil without having a formal Lupus diagnosis. To get a Lupus diganosis you need to have 4 or more of 11 Lupus criteria, within a 5 year period. A lot of people have less than 4, or as in my case, more than 4 but spread out over much more than 5 years. So it's very possible for plaquenil to do good without you being considered to have Lupus.
I went on plaquenil in 2004 for joint pain, high ANA and pericarditis. It stopped my symptoms cold, after it kicked in in a few weeks (one must be patient with plaquenil) In 2015 I got pleurisy for five months; after getting routed around from GP to pulmonologist and then to a rhematologist, I ended up back on plaquenil and once again it worked its magic and really helped tremendously with the problem. I just don't know what I'd do without that drug. It's very, very effective for people at the milder end of the UCTD-Lupus continuum (in other words, people with mild Lupus-y disease; in more severe cases it is usually still part of the mix but definitely not the whole treatment). If your doctor won't diagnose you with Lupus, he probably thinks you fall into that category of milder disease.
In the old days, getting a diagnosis of Lupus was really bad news in terms of health insurance, so doctors tried to avoid it unless it was a clear cut case. In other words, once you had LUPUS tattoo'd on your forehead, your rates skyrocketed and you could lose your insurance. At least that's what a rheumatologist told me back then. With the new health care law, I guess it doesn't matter anymore. It's not like insurance can raise your rates if you have Lupus, but in the old days that did happen. So historically, I think doctors avoided that dx, but perhaps going forward they will be quicker to call mild / borderline cases "Lupus". However, it's been my experience that patients are far more interested than doctors in putting labels on things - rheumatologists are pretty focused on the practical issues of your symptoms and how best to treat them, not on whether something is UCTD or Lupus.
Intestinal problems should resolve pretty quickly, but I do have ongoing gas/minor discomfort from plaquenil. Beano and Gas-X help a lot with that. It's a small price to pay for the major positive impact of the drug, for me. I'm on 400 mg/day. Trying out different times of the day and/or taking it after a full meal might help.
Post Edited (LarryF) : 6/26/2015 9:02:05 PM (GMT-6)