Dear Patti
I really identified with you when I read your email. I can just imagine your confusion and frustration.
I too had a Rheumy treating me for Lupus, but had been without a GP for a long while, finding one fast and in desperation when I started to flare and couldn’t get my next Rheumy app’t moved sooner. Pretty much his first words were to blame my symptoms on the Plaquenil and say he would take me off of that and didn’t think I had Lupus at all. But the Rheumy is the specialist and I think would likely not be treating you with Plaquenil unless there is good reason. A Rheumy can look at labs and symptoms in a way that a GP cannot. I would follow your Rheumy’s advice, and maybe ask him/her some of your questions about the labs. Just because some labs are normal now, doesn’t mean you don’t have Lupus and so the Rheumy would be the best advisor.
What tests did your GP do? I would also get a printed copy of all your lab results from now on…….I have had GPs tell me things were normal for years, and when I finally requested copies, I see things that were not, and now I find out they were significant. You think you can trust the GP when he says everything is fine, but I’d get the printouts anyway, then you are more able to ask questions. Sometimes you may have tests that are slightly out of the normal range, so a GP doesn’t think it is significant, but if this same thing is abnormal time and time again, that should alert them to question further. I have found that you can’t rely on a doctor to look back and make those comparisons, I learned the hard way about this.
If there is possibility that you might have a something other than Lupus, you could ask your GP what he suggests as far as differential diagnosis, but I sure wouldn’t make treatment changes without your Rheumy’s approval. Also, it’s important to remember that having normal labs doesn’t mean you don’t have Lupus.
I guess my big advice is to get clarification from your GP whether there were abnormalities, and if so, ask what follow-up is he doing on that. Also make sure the results are communicated to your Rheumy. Get copies of all results and keep them in a file at home. If you GP thinks it is not Lupus, ask what he thinks is the problem and what he is doing about that (more tests?). Talk to your Rheumy about what your GP is telling you.
I hope this helps.