I personally can't tolerate the steroids-they make me stark raving mad! My first rheumy wanted to do chemo- I switched doctors! I have managed with the paquenil and some pain meds when it's real bad. I believe that we need to be involved and have a say in what we want to put into our body.

I have just been told that I have to be weaned of Methatrexate,they want me to be on steriods while they find another suitable drug.NO WAY AM I GOING BACK ON STERIODS,had enough trouble with them before.I just won't take anything until they find a suitable solution.Stick with the pain meds and hope for the best,no steriods no way not for me.

I disagree. I have been on prednisone since I was a child and am now 45. It has saved my life when my organs started shutting down. I still need a low dose daily. I did "blow up" on large doses, but am now on a low dose and am more "healthy" than most people I know. I was so blown up as a teenager, people did not recognize me. The teen years were very very difficult for me. At 5 foot, 100 lbs. my husband can't believe how much food I can pack away. It's what you eat, not how much. Most Dr. will want to reduce dosage as soon as possible. There are other side effects also, but not everybody experiences the same ones. I would urge you to listen to your doc and work with him/her to decide on the most effective, long term treatment for you. They are now finding low grade inflammation in lupus is causing premature heart disease in lupus patients. At 40 yrs. old I needed a triple bypass and have other heart problems, thanks to the lupus, not the prednisone.

What's important is that you are taking an alternative form of treatment for your lupus. For other people who refuse to take steroids, they have to understand that the lupus will only get worse unless they have some other form of treatment such as what you are doing..nutritional theraphy. I wish I had gotten a second opinion when I first got diagnosed, but I didn't know better. NOw after 8 yrs of being diagnosed, I'm finally off steroids and being more consistent about my nutrional supplements. One of them is fish oil..it may taste nasty but I'd rather take this vs chemo all over again.

As for me the steroids make me blow up and blood pressure go up. Even my doctor says that steroids are not for me.I hate the steroids and I have found a wonderful replacement!

omg am i so glad to hear that there ar other people who refuse prednisone, i swear,i jst moved and a new doc has put me back on prednisone, honestly i feel worse, wen i tell people around me they just suggest that i take it coz it will save me, but since taking it, im emotional, i sleep more, im just not myself, i literally change, its so weird, i hate it so much and am thinking of just stopping the prednisone and take more fish oil, i was more active until i took this prednisone, my husband says i look better only coz before the prednisone i was alot skinnier, but i feel worse inside, does that make sense.....i honestly feel like i dont want anyone near me while im on prednisone coz they jst dont understand my moods...i hate it

i havent gotten to the point of steroids, maybe cuz i dont have an actual doc. but it scares me to think about taking such harmful drugs. i'm very pleased to know there are people on both sides of the fence to talk to. but more than that i'm happy to know there are people who really hate the idea of putting harmful, toxic, treatments in your body. your right we need to make sure we have a sey with what goes in are bodies!

I actually like the steroids. I'm glad I didn't get the weight gain but I feel like wonderwoman. I do get a little batty but it does go with my personality at times so it's ok I guess. I still do not want to be on it and the Plaqinil was horrible. Ok I've read Fish oil is good. What about getting a nutritionist or something. Will certain foods help?

Prednisone has been wonderful for me. I have been on a low dosage for about 5 years. I didn't blow up or gain weight. It is what has kept me able to function. Everyone is different and depending on what type of symptoms you have, treatment varies. Believe me, I hate taking medications and keep it to the minimum. I only take Plaquenil and prednisone. It's all about weighing your symptoms and the side effects. I sure wish it was easier.

You should feel very fortunate that you have a choice because in September when my lupus attacked my heart and lungs causing pericarditis and pnemonitis if prednisone did not exist I probably wouldn't be here right now. But believe me I hate the side effects: I have the lovely moon face, prednisone hump, huge torso, thinning hair, burning in my calves, blurred vision, and oh by the way a hip replacement I had to get in 2001. So I am right there with you as far as not getting on prednisone unless you absolutely have to. I won't let them give it to my kids for any reason such as sports injuries and inflammation from dental surgery so I understand what you are saying. Just remember it is a choice of life or death for some of us and of course I choose life.

Love and God's Blessings,

Sherry