Flaring

Ok guys.... I don't exactly know what to do.... when I stay at home on disability my labs are great! picture perfect!!! When I resume normal activity.... the toilet... already had to have 3 iron infusions IV.... feel like ka ka... only thing that made me feel better was the IV steroids the dentist used to take out my wisdom teeth!!! how do I keep my lupus under control without the steroids?? B

I am on plaquneil cause I refuse to take the steroids so afraid of the side affects that they have. My rhuemy wanted me to try cytotoxin(sp?) or Imuran(sp?) told her I would have to think about it. I am afraid of the side affects these kind of drugs have. I tink it would have to come down to a life and death situation before I agree to steroid treatment or any of those other high potency drugs. I'll just deal with my lupus problems as best as I can

Thanks for the reminder.... perhaps it is time to rejoin the plaquenil group? Just so, so, sick of being in pain. Anyone out there tried going to a pain specialist to deal with lupus issues? b

Sphinxy-

Yes ma'am!  Couldn't live without Dr. Pai (pronounced like "pie", and yes he's just as sweet.)

I get a spinal for back pain (more prevalent since I gained weight on prednisone.  Not taking that crap anymore!)

I was taken off plaquenil when my vision began to blur, but I'm considering getting back on, since my Opthalmologist said there were no changes from my baseline testing.

It did help me to live a more normal life.  Fewer flares by far.  And I have a double whammy with lupus and fibro!

DAY-um, GIRL!!!!

I just glanced at your picture in picture!    How far out are you?

Hello I hope everyone is feeling better I also have lupus and had my surgery was on 5/5/06, prior to surgery and still now I am on Plaquinol, methotrexate,and prednisone and you would have to kill me to give up my meds. Before taking them my joint pain was so bad i could barely walk and I finally gave in to my rhumie and did what she said and am feeling 100% better. Good luck I hope you find a medication that works as well for you.

I have Lupus and l am Plaquinal as well as Depro Medrol Shots do not mistaken this for Depro ME the birth control shots. My shots are for Inflammatory Arthritus due to my Lupus. Without these l am in a wheel chair and l cannot function. If anyone took these away from me, you might as well hold a memorial service for me, that is how much they work for me. I have only been on them for 1 year, and what a difference the one year has made on me for my life. If you take Plaquinal and it works for you, take it, it is soooooooo worth it. But, this is just my opinion. Thanks Sharon M Cambridge, Canada

I had been on Plaquenil for 2 years prior to the surgery. The DOC wouldnt perform RNY unless I was off all the meds, so off I went. By Post-Op month three I was feeling great in the weightloss aspect, but the joints were crying!!! So I am back on it. 200mg twice a day. Doing much better now. I too am afraid of the steriods. Heck, I am a firm believer that they played a BIG role in my becomming twice the woman I once was ;) Good luck I hope you feel better soon...Lord knows I know how you feel!!

Hi, I read your post regarding meds for Lupus and arthritis. I am 10 days post OP and feel like I have one foot in the grave. I am only on Enbrel (Injection that has never worked on pain and fatigue) and will start taking methotrexate in a couple weeks. I took plaquinel for months and I felt no improvement, it just gave me gas! My feet and hands hurt all the time but more importantly, I barely have enough energy to get out of bed. I only leave my house for an errand every few days for less than an hour. I am so exhausted! Did you feel this way afterwards? If so, for how long? It has left me in a very bad place. and it feels like it will never improve because I feel so bad! Marie

Hi Marie, Thank you for your e-mail. All l can say is it take extra time for people with Lupus. I am just taking for granted you have SLE Lupus. And becasue this is such a difficult disease on it's own alone, we have double jeporady to try and bounce back from any type of surgery. I have not had surgery yet, l have mine this Thursday( 7th), so l really have no idea how l am going to respond, to be able to tell you how l feel. BUT, l have discoid Lupus and not SLE, l truly believe that this makes a real big difference. I also have Fibromyalgia, and some times l feel like l did die and had gone to hell. If you are only 10 days since u have had your surgery, u need to relax and give yourself extra time and not make such demands upon yourself. You have just gone through a huge operation, and you already have a debilating and challenging disease. Take the time you need sweetie, to recoop your energy, you are worth every moment of time that you require. Please tell what type of surgery you had and was it open or lap? What is bothering the most? Is it the exhaustion or pain? I may not be able to get back to you right away, as l am leaving Tuesday (5th) to leave for the USA for my surgery. I will look you up when l get back to my hotel room and see if you have responded. Take care sweetie, you will get through this, put all your faith in your higher power or what ever faith you have to keep you going. Try and think positive, god l know how hard it is, but if you have to make it through your time by taking 1 minute at a time, this is what you need to do. I hope you are feelin much better soon, and may god bless you Marie and get you better. Talk to you soon. Hugs Sharon M Canada