So I have not been formally diagnosed, but new doc did not hesitate to order blood work. She had to stop me a few times from trying to convince her I was sick, she heard me the first five times, lol. I am so used to being brushed off, that day was priceless. I was running a fever, swollen rashed out and miserable. She was concerned from the word go. She said given my current symptoms and history/family history it does look like lupus, but she needs to run labs before she hands down the diagnosis. So my next concern is what is the usual treatment of lupus? At this time we do not know if there is any organ involvement, we suspects there is (kidneys). What is the typical course of action and how does that affect me and how soon. I do understand that everyone and their lupus is different, but is there a general protocol? Also is it too vein to whine about my hair loss and that I want it back??
Hair Loss urgh! No; - whine away you are entitled. There is a very good chance it will re grow when they are able to suppress the Lupus, so keep that in mind on bad days. Mine is about 3 inches long with two rather fetching wings that did not fall out either side. So I have a lovely 'finger in a powerpoint' halo effect. Best Wishes Kaz xo
Good for you…feel better
Hi there! I too had/have alopecia during flares (ranging from big clumps to thinning)- Plaqunil (which is somewhat of a standard medicine for us who’s lupus effects our skin, has helped this- however, believe it or not, I have discovered that coconut oil (put it in scalp and hair about 15 min before washing and conditioning) has stimulated my hair growth! Love and swear by this (and rock some cool headbands during the times when my hair is half gone)! Coconut oil is also good for a number of other issues that we have such as rashes (I put it directly on a lesion) and also helps with any GI symptoms caused by lupus or any of the medicine.
Techniques to lower stress helps as well (meditation, tai chi, breathing deeply, eating well, music, cognitive therapy, friendship and even pets if you are into them & not allergic!) can help lower stress along- as stress too can cause hair loss and is also known to contribute directly to flares.
You are so correct when saying there are none of us with the identical symptoms, therefore, the course of treatment will vary depending on each unique case… but, I have found that this site is a great place to vent, but also get some great feedback and tips to make life more manageable- I often times look through the topics on here and find myself saying “me too!”- knowing that I am not the only one out there that is going through this helps a lot.
There are some wonderful websites that can walk a newly diagnosed lupus patient, but while it is necessary to be educated, some of these sites can be scary! Support via others in the same boat, along w/ good communication with a trusted physician who knows this disease (often times very hard to find!).
I’m hoping that your labs come back ok- I will be thinking of you! 
-Be well… “Hopeful”…
Even if the first set of labs is not indicative of lupus, from my understanding (and experience) it does not necessarily mean you do not have it. And on the other hand, positive labs are not a 100% certainty that you DO have it. Lupus is very tricky that way, and very difficult to diagnose. I was told different things by every rheumatologist I went to, and I went to about a half a dozen over the years - and got different lab readings every time. It was only when my symptoms were SO consistent and obvious for so long, and I had been two positive ANA's in a row, that my neurologist and my GP (who know me well, and have been treating me for years) both decided if it looks like a duck and quacks like a duck, it's a duck, and started treating me for lupus - and put me on plaquenil.
You are very fortunate to have a compassionate and vigilant rheumie -for some reason all the ones in my area seem to be crackpots, cruel, or at the very least, extremely cold and uncaring. (And it's not just me - I've talked to a lot of local spoonies who've had similar experiences!) I will leave it to the other more experienced folks here to give you more info on what to expect- I've only been on the plaquenil a year, and so far have been fortunate to have no major organ involvement. But you couldn't have come to a better place for both information, and kind, understanding people willing to listen to you vent and whine anytime you need to - and believe me- after 15 years of this, I TOTALLY understand the need to vent and whine now and then (I did it for about 2 hrs. at my DH this morning! Poor man.) Good luck, and I hope your dr. is able to bring about some significant improvements for you soon.
I, like you, are in the limbo stage of diagnosis. After tons of blood work and my list of symptoms, my rheumy still is not positive it's Lupus but does say it probably is. I have noticed though since going on the Plaque-nil that my hair loss has slowed down a little and my facial rash isn't as prominent as it was. I use a lot of lotion for my dry itchy skin and that helps in that respect, the best I've found with the greatest effect and scent is Camille Beckman's Camille lotion. It's hard to find but can be bought directly from their website, just love it! I do have a lot of stomach issues with pain in my lower back and abdomen but they haven't decided yet if it's related to Lupus or not. I go back in October for another round of blood tests so hopefully she will decide for sure if it's Lupus or not. The one thing she did say was that it was definitely a "connective tissue disorder" of some kind. So who knows, all I know is from reading everyone's posts here, it's like reading my medical history. LOL
Hi!, well Lupus has it on mind, there is never a break!! One thing that I have done to keep my hair from falling out, I cut it off to short style. Now it don’t fall out!! But like I said Lupus has a mind of it own, we just have to deal with it, and roll with it-like champion, take care …Beverly L.
I go this week to find out if my labs actually show up with something this time. And, I actually feel pretty good right now. By that I mean, no body pain, no migraines, my shoulder pain is tolerable, ect. However, I’m so tired I can’t keep my eyes open. That’s been going on for about two weeks. Every day / week seems to bring something new. I just don’t get it and the frustration just kind of festers… Anyway, hang in there, that’s pretty much what we gotta do.