New and Need Advice
I asked this question on another site and am interested in what you all have to say. I have many symptoms that point toward Lupus. My medical doctor did not know what the rash on my hands indicated. I live in Alaska and do not have access to a variety of good medical physicians. I had another flare up while visiting KC and the doctor I went to sent me to a specialist in rheumatology. After hearing my symptoms and health history as well as viewing pictures of the various rashes that I had recently developed, the doctor said that she felt that it was Lupus and ordered a bunch of lab tests. She then put me on plaquenil and prednisone. (I had been given a two week supply of prednisone with the first doctor and it seemed to be helping clear up the rash. She felt that my symptoms indicated Lupus and that I should start taking these meds before the lab results came back, which I did. The problem is that the lab results were negative. She felt that the prednisone had skewed the lab reports and that the symptoms themselves warranted me taking the plaque nil until I could get into see a specialist in my area. I can not get in until December 2. Is this a normal thing to do? I have had a baseline check of my vision per her indication that plaq caused eye problems. I have recently had the worst period cramping of my life and the rash came back. Can anyone give any advice on all of this please. I don't know if I should be taking this or not and don't really want to stop it if I do have Lupus. The doctor said that she felt a future ANA test would come back positive and this was the best way to deal with the symptoms. Any insight is welcome. Thanks Deb
and welcome to our cyber family.
remember none of us here are doctors, we can only talk about our experiences, and what we have learnt.
it is not uncommon for a lupus sufferer to have a negative ana.
plaquinel is a good medication for many of the auto immune disorders, so taking it is a good idea.
we have a thread listing the 63 different auto immune disorders. many of them have overlapping symtoms, and to confuse matters more, it is not uncommon to have multiple disorders at the same time.
please take the time to read a little on the site.
i hope you can sort out what is happenning with you, and start the correct medication.
Originally Posted by steve.bryce
Listening to this doctor if it feels right to you while awaiting your appointment might be a good thing to do...but that is just opinion. See if it helps and then you have something to report.
Also and either way, start making a daily chart of what symptoms you are experiencing. I did this while awaiting my first rheumatoligist appointment and it helped me to remember all that has happened which in turn helped the docs.
Good luck and best wishes on finding out what's what with you. Take care,
Welcome, Deb! Getting a lupus diagnosis is often very complicated, and some folks get the diagnosis "taken away" even after they've gotten it. The doctor you saw sounds concerned and proactive - two kind of rare qualities among physicians. She gave you meds to get you through until you can see a rheumatologist back home. It seems prudent to follow her directions, unless you are having problems with the meds. If you stay on the meds and still have the rash then that is important information for the next doctor. ANA's are kind of the bane of the lupus world and rheumatologists all seem to have their own opinion about how important a positive test really is. I was treated for lupus for 2 years before mine "turned" positive.
While you wait for that appointment, may I suggest that you keep a diary of your symptoms, exposure to sunlight and fluorescent lights, activity level, etc... and see if there are any patterns. For example, if you work out in the garden today and then notice that your rash is worse tomorrow or you just don't feel good. Take time to gather your medical records, especially the ones from the rheumatologist you saw, and any labs or x-ray reports. Write down questions you have. It's good to do some reading and research, but that can be a double edged sword because there can be a tendency to try to "make your symptoms fit." Please stay in touch and let us know how things go.
Being diagnosed can seem to take a whole lot of time. There are too many symptoms that are the same as other auto immune diseases so it makes it difficult for the doctors to sure on lupus. After a many many tests on my sister they decided it was lupus after a month or so. Which is a long time especially because she was flaring up really bad and retaining alot of fluid in her. So I was kind of nervous waiting for what the doctors say about my sister.
I will be sure to keep you in my prayers. Good luck and keep us updated on everything.