How do you know when a flare is coming???

so even after increasing my iron supplements to 3 times daily, my doctor said i am still very anemic....he says that my anemia might be due to the medications i am on rather than an iron difficiency because my hematocrit is about 50% of what it should be and it is not increasing even with the iron supplements. So my doctor said to decrease my cellcept dosage from 1250 mg twice a day to just 1000 mg twice a day. But here is the catch...i am supposed to go to the east coast to visit my friends on thursday for about 2 and a half weeks...my rheumy advised against it but he said he can't stop me from going. He also said if i DO choose to go that i should call him twice a week to let him know how i am feeling and if I think i am about to have a flare i should double my prednisone immediately.

So here is my question: I am so new to this disease and I know it is different for every person, but how exactly will i know if i am about to flare??? I have not had any joint pain ever so I dont think that would be a sign for me, but are there others??

These are the meds i am on right now: prednisone, cellcept, plaquenil, coumadin, baby aspirin, xanax, ferrous gluconate, Micro K, vitamin D, protonix, lisinopril, and celexa

Thank you so much for your help!!

Misscali, I don't have a lot to add to what Pat has told you. I can't really predict a flare either, but I do know if I have something big planned then I had better plan quite of bit of rest and down time afterward or I will flare for sure. Like Pat said, sometimes a flare can keep you down for months, so you do have to be careful not to stress your body too much. Some possible clues for me that I might flare are in increase in fatigue, pain and developing a fever, but by the time that happens it's usually too late to stop my flare. If you do decide to go on your trip, my advice would be to make sure you have lots of down time and times worked in to take a rest. Whenever we take trips somewhere we try to make sure we have enough time to do some fun things but to also have a lot of breaks in the day where I can rest. It sounds like your doc is very concerned about you, so it does sound like it's important to call him right away if you start feeling worse. I'm guessing he wouldn't be concerned if there wasn't a good reason. Take care and let us know what you decide to do about your trip.

I think the most important thing to do is to listen to your body. If it's telling you to slow down or to rest, then listen. I get into big trouble when I ignore my body and push through the pain and fatigue. I really hope your trip goes well and that you are able to stay healthy. Take care

ok i will definately make sure to take care of myself and i will still be in contact while i am there if i have any problems!

also, i have never had mouth sores before but once in a while ill get something like a tiny "bubble" or something in my mouth. if i brush it, it seems goes away immediately though. is that what a mouth sore is??

Hi Everyone - I just signed up today - its always great to talk to people with a similar condition because no one understands how I feel (except all of you!).  I've been reading your posts - I don't have mouth sores but I do get "sore mouth" - anyone else experience that from time to time?  Here another couple of questions that I am SO curious about - do any of you suffer from boils?  What about fly bites - any type of reaction?  I get quite a reaction to mosquito bites however, I am severely allergic to bee/wasp etc stings so I don't know if this is related to that allergy or the Lupus.  I know this post is off topic but since I have a captive audience... lol

Sue

Ps.   I get tired too - I just made a decision last week to slow down at work a bit and to listen to my body too!!!

Sandspoker, welcome to the forum! I've never had a "sore mouth" so I can't help you with that. I hope you find that you're tiredness subsides a little when you slow down at work. The less I do, the better I feel. It's hard on the social life, but what is a social life when you always feel bad! Sounds like you're on the right path. Tell us more about yourself.

Pat

The times that I did go into mild flares (I have had a few false alarms), I felt just like I did when I am about to get the flu. Very weak, lightheaded, and drained and now I wonder if its the flu or a flare (neither of them sound better than the other to me).

Hi Pat and Omega - Thanks for replying -

I'm a 41 yr old female who had "something" for a long time.  I guess it was after a summer of really bad arthritus that my doctor asked me if I wanted to get to the bottom of it and I said yes.  After my first visits with a rheumy (catching on to the lingo here...lol), I was diagnosed with Raynauds.  Then my Lupus indicators took off.  My sister too has lupus - she was diagnosed 30 years ago when the disease was relatively unknown (imagine how long it took them to diagnose her).  I suffer from chronic pain - one of the hardest things about this disease is the fact that I look fine so people just don't understand that I am sick (I've been trying to get through to my husband that I need his help).  In the past, I've had bouts with hepatitis, pneumonia, and pleurisy.  I'm not sure if any or all are associated with the disease but thought I would include this fact.  Like I mentioned, I am learning to rest more and I've had to give up some activities that I enjoy because of the pain.  Such is life though I guess...

Btw, I read another list of indicators that included reactions to fly bites - this alternate theory was based on the fact that Lupus has an effect on the skin - that's why I asked the question.  That alternate theory made me wonder about the boils...