My Head Is Spinning!

Does anyone know at what point does Lupus go at an inactive state? I have been in full blown activity for 3 years straight. I am sooooo confused. I have a lot of chronic conditions and Lupus (Discoid & System) just add to my issues. I have another connective tissue disorder and don't know if this is what is causing it or not.

Any info would help,

Thank you

Hi Zipperhead! I am in the same boat as you. I've been in an active state for the last 3-4 years and I too have Discoid & systemic lupus along with other autoimmunes. Gosh it is crazy. I've tried a bunch of different medications ranging from plaquinil, dapson, celcept, methotrexate, and imuran. Nothing has worked for me except the prednsione which im currently on (and have been for the last 3 years). My next step is to try benlysta or actemra (which I've heard good things about). I think the key is to find the right medicine and have a healthy exercise/diet... sounds easy when I say it like that but we both know it's tricky. I don't know about you, but I'm in my early 20s and have been told that things might start to go dormant as I get older and find the right combination of treatments. I hope it's soon! Good luck!

I don't know exactly when Lupus can become "inactive," since everyone is different. But I can tell when its inactive if I do not get any flare ups for, say, about a month. I am currently in remission because of my kidney failure. I still don't understand why that is.

My lab work shows I am "inactive" after over two years on plaquenil, but I still deal with fatigue, joint pain, and just plain feeling poorly. I was considerably worse a few years ago though, so I am happy about that!

So when your blood work showed inactive. Died that mean you show negative on all labs?

It’s not as cut m dry as we would like it to be. I am referring to Lupus n it’s being in remission. It sounds like you have some over lap in your diseases. Remission may just mean your labs look/are better. But actually how you feel n function is what really matters . Talk to your doc/rheumy or nurse practitioner in office for info on your status n what to expect. Lupus n these autoimmune diseases are very individual on how they affect each of us. Sorry cannot be of more help. Keep the Faith!!

There is no rhyme or reason to this, it does what it wants, when it wants. I know how you feel, I haven't felt good in forever, can't even remember the last time I was pain free. All I can tell you is hang in there and talk to your doctors, education is a big part of having lupus, learn what works and doesn't work for you, take care and feel better

Hey outatimemom, all my blood work showed negative for any autoimmune type labs and all the other labs were within range. It didn't seem to matter if I felt like crap still. It doesn't matter I get a rash on my eyelids whenever I get sick or physically, mentally stressed (breast cancer, etc), or I get sores on my gums (because they aren't in my mouth part). It is very frustrating.

outatimemom said:

So when your blood work showed inactive. Died that mean you show negative on all labs?

Love all this info.

Wow, ya'll have great information. I guess what I need now is where to go to find really good, accurate information. Any ideas?

I do not have any other autoimmune disease except for the SLE and DLE. I have 2 genetic issues which is Arnold Chiari Malformation and Ehler's Danlos. The Ehler's Danlos is a connective tissue disorder. This effects all of the smooth tissue like collagen between my joints. EDS also does not allow to hold vitamins and minerals in my body correctly. The Chiari has caused and effected my body in so many different ways that it is hard to explain it all. I do so much research on those conditions that I hadn't really taken a lot of time on Lupus. :(

I avoid the sun if at all possible however I do believe that the new light bulbs that are out now irritate me. My doctor has me on plaquenil and cellcept. The cellcept makes me very nauseated but I just keep taking it because I want the crap to clear up!

Thank you all for being so supportive. :) It does help to have someone to ask questions to and read and get information from. :)


Ann -

Thank you so much. You have such a positive attitude about things. That is wonderful. I do try to most days myself. It was just something about the bloodwork results that came in the other day just made me stop and ask my. When? I am really am glad that you and some of the others gave me so much information. I sure need to sit down one day and read all the information I can find on Lupus. I am currently in support groups for Chiari & EDS on facebook. I have not looked into the Ben's Friends one. I will though.

I am so thankful to have found this group. Thank you all for the help you have provided..


I was diagnosed at 18mths old and I have only gone in to remission once for a summer when I was 10yrs old. Remission is more of a goal than something that is guaranteed.