My sister just found out she has Lupus..What will happen now?!

My sister just found out she has Lupus..What will happen now?

She was referred to a specialist...what's he going to tell her? Is she dying or is this disease like diabetes(where it can be treated easily or even cured)?

Hi I am so sorry to hear she has lupus. I do and have had it since I was about 13 or 14. However, it was the early 80's, before the diagnostic critera even came out and drs knew much. I am now 40, and have had some serious what are called falres (periods of activitiy). I can tell you, the specilist she will see will be a rheumotologist, the most important partner in her team. I went through a few toads until I fornd my Queen. She has kept me alive, she keeps me complient, or she comes down on me big time, and cares. I sure hope she has several drs in taht field to choose from, because in the end it comes down to personalitites meshing well.
I can tell you this much. Lupus used to be a death sentance within maybe 10 years for severe cases. that is no longer the truth. The medical advances made in just the last 15 years have been astounding, and I have seen the changes, so have been the doctors knowledge, many continue going to continuing educational resources like Lupus symposiums, seminars etc. I do tend to get insulan dependent diabetic when on certain medications, so I take them as short term as possible. once finsished, I go off. There are so many medication options for the different stages of the autoimmune disease. This, like all autoimmune diseases is not caused by outside invadors, but by what is termed friendly fire. Our bodies, belive it is being attacked by outside invadors (excuse my spelling, im not great, and cognitive is an issue with lupus at times). so our own bodies go into to hyperdrive. and our own cells thinking something is wrong, begin attacking themselves. Lupus can range from mild to severe. I am more on the moderate to severe end. My dr sees me eve ry 3-8 weeks depending on disease activity, now its 4 weeks. a good Rhuemotologist, will do their best to balance pain control, any central nervous system damage, organ damage, and skin damage. there is a wide range of problems associated with SLE, or systemic lupus (therre is also dicoid whic only goes after skin, like the singer seal). For joint, and arthritic problems, the drugs of choice belive it or not are antimalarials. They do help. Early on they helped me. Next for inflammation, some minor organ issues, and to supress the immmune system they use prednison and it cousins (cortisons in the steroid family), they have their side effects, like weight gain, diabetes, and so forth, but for the right people, the help them. Personally and after all my years of experience, I wont take them except when hospitalized. Next step, are mild imunosuppresents, one is called Imuran, and is widely used, I take it now. They give it to Kidney transplant paitents as well. it slows the hyperactivity of our immune systems, thus slowing down activity in many cases. If the flare is more severe, they may use mild chemotherapy agents such as methotrexate. I loved it, my organ involvment is liver, and its hard on the liver so we stopped. next would be drugs like cell cept and cytoxin. both work simarly, I was on the chemo cytoxin for 2 months orally and 3 months IV. while not pleasent. it got rid of my brain inflammation, and worked. There are also meds for specific issesues.

Lupus like many autoimmunes is not curable as of yet, but controlable, with proper care and and a good medical team, meaning primary, rhuemotologist, and other specialist suited for your sisters needs. many will and do work together, and you may need time forming a team willing and able to share info, and consult as needed.

I know stress can contribute to the starts of many flares, so she needs as little stress as possible. another thing while there is an official criteria for diagnosing Lupus and you must meet 4 of 11, it was last updated in 1982. over 20 years ago. Ihave moderated and owned online messageboard based support groups. many of our problems go way beyond those 11 critera, like brain fog, female problems (including many hysterectomies at young ages), severe alergies, inability to remeber simple tasks or yesterday, but we can remeber long term. many dr's feel the critera needs to be updated, hut nothing has been done.

I know people including my own mother who still works (I do not) in there 60's going strong. ther can be a genetic componenet, enviromentel, or even a major car accident, with an autoimmune laying dormant that can trigger it. researchers say why the ratio to men to women getting it is so stacked in womens end 90% are feamle, is the estorgen and other hormones. so noone knows for sure.

I hope I answered some questions.
no its not an auto death sentance, of the thousand Ive come across2 have died, one I belive in part was morbid obesity (well over 150lbs over), the other lupus so extream, no one could help. pretty low odds.