I've been diagnosed with lupus since January of this year. I've been dealing with flair ups since. I was unable to get out of bed everything was to exhausting I was put on plaquenil and that has gotten better but all my joints and muscle are painful and still have fatigue. I'm always wondering if this is how my life will be or will somedays ever be normal. Found this website that has helped

http://www.lupus.org/newsite/index.html


Keep in touch!

I am on Plaquenil, but if it wasn't for the Prednisone, I wouldn't be able to walk or move my elbows. I take 20mg/day.

Ouch 30 Mgs of prednisone is no way to live along with having the pain you do. In my opinion your not in a flare I think that this is how your lupus manifests or presents its self. Years ago before I was diagnosed the only time I was not in pain was winter. I then got really sick. My red or white blood cell stopped producing. Shortly after that and a biopsy I was diagnosed. The reason when I got worse in nice weather was because of the sun. Ever since then sun has been a trigger (gets worse every year for me). Now flashing forward to recently stress is also a big problem.

I know my triggers which are sun (UVA and UVB) and stress. If I don't manage these two. I get a lot of flares or I get very sick.

Have you tried other Meds? Try talking to your doctor (rhummy). I have a massive hate on for prednisone. It did more bad then good for me.

I hope my answer helps.
Wishing you a peaceful nights rest

Jen

I have been diagnosed since Sept 7, 2007. I have SLE, nephritis lupus, and discoid lupus. Originally I was just diagnosed with SLE. My meds have changed several times. Things work for awhile and then for some reason they slowly start to not work and they try a new med. I have been on Cellcept (thank god the generic brand now for financial reasons) and it has been working well for me. I have alot of pain and have different pain meds that I can use but just don't tend to use them as I'm already on six prescriptions and 7 over the counter for the adverse effects from the prescription. I have found through experience that my life isn't like it use to be before. I can't lift bales and throw them anymore. I'm lucky if I can open a jar that has already been opened some days. What really helped me understand what lupus does to me is "The Spoon Theory". Google it and read it as it may help you understand how your life has to change now. If your body needs to rest, then rest. I can vaccuum or mow the grass but then I know that the next day or so I will have to take it easy and relax. I'm no anemic and have headaches that could indicate the possibility of a stroke coming. I still work full time and some days it is hard to get out of bed for work. My weekends are my rest times where I don't do anything unless I have the energy. It's probably easier for me because I'm single and it is just me and the dogs. Please look up the Spoon Theory as it helped myself and my family and friends understand the day in the life of a lupus patient.

Good luck and God bless!

Here's a link to The Spoon Theory that bookkeeper64 mentioned. I read this before, because we refer to it a lot on the Polymyositis forum. It is good to share with family and friends, too.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Thank you Bookeeper64 for showing me the Spoon Theory. I have MS and my sister is in the hospital getting therapy for a broken hip due to Lupus. The Prednisone she has been taking for 20 years has eaten up her bones.
I have am having a hard time getting her husband to understand. Even my sister could use this Theory to help her deal with this. So Thank you very much.
MacT

Hi,
I 've been diagnosed with MCTD leaning to SLE since November 2012.Althought I had high anti-DNA for 2 years I didn't had any symptoms.Last year my joints started to swell and I had terrible pains all over my body,I couldn't sleep at night so I started to have Celeston injections(cortizon) once a week - I am from Greece so I don't know if you have these medecins under the same name -which reduced pain.I also started taking Arava which is good but after 3 months I had tachycardia and a big rash as a side effect.I had a quit good summer but after a week-end by the sea I had a big flare.I couldn't get up from bed and when I could, I would go directly to the couch after a while.I got tired very easily, so I am on Plaquenil since then and 1 cortizone injection every 2 weeks(Is Prednisone about the same?).
Since January this year I feel worse,tired all the time,not being able to walk 300 m and having problems with my left shoulder,hip and knee.I wonder,if my life will continue like this.I am 45 years old and I feel like 60!(perhaps some elderly women are even more active than me...)It feel disappointed watching all my family by the sea from our balkony in our rental house but I think that the sun was the trigger for me also last year, so no more sun this year.The problem is that rheum.arthritis and lupus have many same symtpoms so last year I didn't know if the sun was bad for me...
Founding this forum did good to my pshychologie which is almost always down due to other medical problems also ( I had 3 operations for blatter tumors and 3 years of anosotheurapie,which probably fired my lupus condition in the begging last year).
Please don't think you are alone! Other people suffer also.The problem is to find firstly, the proper treatement for you and then a person(a friend or a theurapist to help you with your feelings and to understand your difficult days)
Keep in touch and try to remember that you are not alone!!

I was diagnosed in 2001, started taking Plaquenil amongst other medications. Five years into it I begin having vision problems and went to the doctor, I was diagnosed with toxicity in my left eye. I got off the Plaquenil and within 6 months it was gone. Don't get me wrong the Plaquenil worked great for me but had I not sought medical attention I would've gone blind.. Just a word of caution!

Thanks all, this is very helpful.

Flares can last a long time...especially if you go through a hormonol upheaval like puberty, menopause or giving birth....

I don't think there is an answer, my own experiences tell me, it depends on what caused your flare in the first place....

May I please ask an urgent question ?

I have tried to put a question here in the fotum ( connected with flare-ups),
but I can't find the prodecure as how to start my own discussion and I can't find where I should "click" on the computer to put my own particular question?

Could anyone please explain to me the procedure ?

~~It seems a bit strange, that I know the procedure to answer questions here in this forum,
but I can't find the procedure how to go about and put my own question...
For the life of my I cannot find on my computer-picture anything,
that tells me where to "click" to put my own question...?

Thanks for your help, Kristina.

@Kristina1
First, click on the name of the forum on which you want to post a question, such as "Lupus."
Second, above the list of "Topics"...."Replies"...."Last Post", you will see the words "Add a Topic" (in green lettering). Click on "Add a Topic."
Third, on the "Subject" line, fill in what your topic is about.
Fourth, in the big empty "Message" box below the "Subject" you can type your question or comments.

Hope this helps.