Okay, so you have been diagnosed with Lupus, and you are probably scared to death, you also probably have a million questions; what now? where do I go? what do I need to do? In this section I am going to do my best to answer some of those questions for you. First, take a deep breath....come on do it with me, in through your nose, out through your mouth...there you go. Know this: Lupus sucks, there is no getting around that, but it IS treatable and manageable, you just have to follow your prescribed plan, go to your Dr's appointments, and always let your Dr know when you arent feeling right. Over time you will get to know your body, you will be able to tell when a flare is impending; listen to your body! You can avoid many of the severe flares if you listen to your body and cut it off at the head, rather than when you are already very sick. The following is a list of current treatments for Lupus. It is by no means comprehensive, as there are many different treatments depending on the organs that are being affected. However, there are certain medications and therapies that are used in nearly all Lupus patients, and that is what you will find here. I will continue to add to this as new therapies come out and are approved (lets hope 2013 is a year where we will see some breakthroughs!). Okay, here we go!
First Things First...
Okay, first things first. The most important thing for you to do is to get a Rheumatologist if you dont have one already. This is a special Doctor who specializes in autoimmune diseases. Many people start out with their Primary Care Dr, and they are great, they will help your Rheumatologist keep you healthy, and often when you have a flare, it may be your Primary Care Dr you see first, so definitely keep this Dr! However, Primary Care Dr's have limited knowledge on Lupus, and you need someone who know's the ins and outs, someone who can look at you and know what to do when you arent feeling well.
A piece of advice when looking for a Rheumatologist; do your homework. Go online and google, "Best Rheumatologists in xyz zipcode", this will bring up a list of Dr's that are known to be good in the field. Another great resource is the Lupus Foundation. Go to www.lupus.org. They are a great resource, and will actually give you a list of Dr's in your area that the foundation has worked with, and respect. This is actually how I found one of my Dr's, and Im so glad this resource exists!
Once you find someone you like, make that appointment! Before your appointment sit down in a quiet space with a pad of paper and pen, (or your laptop or iPad if thats easier for you!), and write down your history. Go back to the very beginning when YOU think things started to go wonky. I know for myself the Dr's told me they think my onset of Lupus was in 2006 with the Pericarditis. But if I look at it, I actually think its 2002 when I started having one weird illness after another, that nobody could find a cause for. Do this for yourself, write down everything you can think of; weird rashes, sleeping pattern changes, frequent illness (like colds and flus) that seem to happen more than normal, hospitalizations, fatigue, joint pain, anything and everything you can think of, write it down! You might not think it's important, but it may be a clue to your Rheumatologist, and could help aid in a diagnosis! Take this list with you to your first Dr's appointment with your Rheumatologist. A few other things to bring with you are previous medical records; things like lab work, CT's, MRI's, and any records from hospitalizations. I know it can be a lot, but it really does help your Rheumatologist when making a final diagnosis.
Finally on the day of the appointment; take out your list and go through each item one by one. Be completely honest, even if you are embarassed! Take your time. If you are feeling rushed, then find another Dr. Lupus is not something that can be diagnosed in five minutes, it takes time, and a good Rheumatologist knows that. Unless you have labs that are specific to Lupus already, then your Dr will probably order a ton of lab work, and youll have to go back for a second appointment to find out your treatment plan. Once you have a treatment plan, follow it to the letter! Keep in constant communication with your Dr; let her know about any side effects, if you feel a flare coming on, if you have any questions about your treatment. This is the best piece of advice I can give you; communicate, communicate, communicate! This is the only way you can be kept at your healthiest!
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