I have lupus and autoimmune hepatitis. I'm currently taking a drug called Imuran which my rheumatologist said should help with both dieases (keep my liver enzymes down and help with lupus symptoms such as joint pain and, for me, sore throat along with excessive belching and chest/gas pain)
So far, after being on a higher dose of Imuran for about 2 wks, I'm finding that it does NOT help (yet) with the symptoms.
There is another drug used for Lupus called Plaquenil (which I'm hopefully going to get to try). It is an anti-malarial drug that was found to help with Lupus.
My rheumy suggested I go back on steriods for about 10 days to get things under control. I said NO, absolutely not, only if I'm in dire straits.
So, don't feel that you have to be pressured into taking a steriod. Do you have a rheumatologist? I would suggest asking about Plaquenil.
Hope this helps!
I have been on and off of Prednisone (steroids) for the last year. I am currently coming down off of a 16 day stent. My Rheumy had me take 20mg for 4 days, 15mg. for 4 days, 10 mg. for 4 days and then 5 mg. for 4 days. I got a lot fo energy and only had about half the normal pain at first (it took about 2 days to kick in) but by the 6th. day I had high blood pressure, my heart felt like it was pounding out of my chest and I couldn't sit still. I had to go down to 10mg. fats and now I am at 5mg. I also take Cellebrex and I found out last week when I didn't take it for two days what kind of pain I am really in without the Cellebrex. Today my Rheumy gave me an Rx for Plaqunel and it takes about 3 months to get working. When he handed me the Rx he said and I quote DON'T EXPECT ANY MIRACLES. I wanted to cry but this jerk tries to blame my fibro on depression so I held back the tears. I was not depressed until I got sick.
As far as the Imuran Erin is talking about, that is a daily chemo and it will unlike Plaqunel stop the autoantibodies but it is hard on your body and I don't think I would take it unless I had some organ involvement. That's just my opinion. I have been getting by on an anti-depressant called Serzone (helps with the pain in the nerve endings and has no side effects on me at all) and Cellebrex for the last year. I am trying to decide what to do next tongiht because my Rheumy said a few things that upset me today so I don't know if I am going to take the Plaqunel or find a new doctor first. The only thing you have to do is get your eyes checked before you start taking it and have them checked about once a year. God Bless ...
Well, today I'm so mad I could spit nails at my doctor. I had a weird episode yesterday, kept me home from work, where I woke up dizzy and couldn't eat or drink anything so back to my doctor I went. (He is still trying to find a rheumatologist for me). I asked him about the results his nurse read me over the phone and he said," You may or may not have lupus. The results pointed to that but there is no definite test for lupus."
I then told him that his nurse urged me to start steroids, but I wasn't putting anything in my mouth (steroids) till I find out what's wrong. He said, I agree. I AGREE????
So then he did an exam and said I might have an ear infection which was causing the dizzyness and prescribed some cipro. LORD IN HEAVEN...I really can't take a whole lot more of the insanity. I'm now just praying for God to heal me and I'm waiting for the rheumatologist referal.
I"d be spitting nails too! I hope the Cipro is helping any possible infection so the dizziness will go away! It is insane trying to figure out all the symptoms and treatments when even our doctors can't be specific! Then, not all rheumies are versed in lupus treatments or symptomatology. Really ~ I'd try the plaquenil, and I take aleve. It works great for my joints! Thinking about you ~ Woshi.
I would suggest staying with the steroids until you can find an alternative natural treatment. The reason I say this is because for a while my Lupus wasn't that active, and I did make it for about 8 months without taking any meds at all. But one day, my lupus flared up, I slept for three days, and woke up not being able to walk and use my legs. I was rushed to the emergency room after my parents came to check up on me at my condo, and was hospitalized on and off for a month. I am not looking for alternative health treatments to try and heal my Lupus.
sorry I meant to say, I am looking for alternative health treatments, and hopefully can rid myself of Lupus. I have found an ebook of a lady who says she cured herself of her Lupus. The website is called www.healing-lupus.com
Thanks to all of you who have responded to my post. I know that God never gives us more than he knows we can bear...and HE is the only one who determines when our last breath will be taken....so I am trying to remain positive and I give thanks everyday for my family and friends.
My mom was a big believer of natural cures for your body. She was a huge aloe vera plant fan. She claimed it would cure anything...burns, infections, colds,....I remember her mashing it up and putting it in orange juice for us to drink when we were sick.
It was not appetizing but I think it got the job done. More later -
I was told in 2000 that I had lupus and Sjogrens and they THOUGHT I had Autoimmune hepatitis. They sent me to a liver transplant specialist in SF who is supposed to be top of the best and he said I did not have autoimmune hepatitis, I was just fat and needed to stop eating fat filled foods. Well, he was yelling at me for being fat (I'm truly not that fat), and making me feel like a horrible loser. I did not bother to tell this A**hole that even when i was in the military 25 years ago and running 6 miles per day and thin beyond belief and very muscular, my liver enzymes still were high and I still had doctors worried. So, I think he just hadn't stepped out of his "I'm better than everyone else" box. Anyway, for years I have been taking Celebrex for joint pain, Methocarbomal for muscle spasms, and zoloft for depression. All have worked fairly well, but not 100% and I still wanted to find out what I truly have, because one rheumatologist said I DON'T have any of those diseases and it would be a waste of our time to see him. I found out later he just didn't like messing with my insurance. So, about 2.5 weeks ago, I finally got into a Rheumatologist with a good rep, (couldn't get in all these years) and she tested me for many things, then said I DO MOST DEFINITELY have Lupus (SCLE), Sjogren's (which is a Lupus Variant, she said), and Autoimmune Hepatitis. She said the 10 days I was on a very low dose of Prednisone (20mg) would have taken care of the autoimmune hep, and she has since put me on Plaquenil. I have had dizziness and nausea from this, but am trying to cope. I had stopped the celebrex and methocarbomal for the 2 weeks and regret it immensely. I wanted to see what Prednisone did on it's own, and once I started the Plaquenil, I wanted to see what it did all by itself. MISTAKE!!! At the 2 week and 2 day point, I couldn't move my leg muscles, they had cramped up so tight and hurt so bad. 2 days of celebrex and I'm moving and damned near pain free. Not entirely, but much better. I have no clue what the plaquenil will do, but she said to start slow with it, taking only one pill per day cause it causes fatigue. I am only taking it at night due to the fatigue. After a week or so I will start the morning dose as well and see what happens. I can only let you know how it works for me. I don't care if the docs say you DON'T have Lupus or they can't tell if you do, as long as you have a positive ANA, it can't hurt to try plaquenil. If it doesn't do anything for you after 6 months, you just stop it and realize it isn't for you. Just keep trying meds that work for your symptoms. Once you get the right stuff, you'll feel better and happier and you can reduce your antidepressants. I would not ever use paxil. I've heard tooooo many horror stories about that and prozac. But, this zolft is working for me, as did Welbutrin and Cymbalta. The cymbalta, tho, is what I was taking when I attempted suicide, so they switched me IMMEDIATELY to zolft and I'm much happier. Zoloft makes my husband and his siblings, as well as my daughter fall asleep at the wheel of a car! they sleep continually on it. I don't. So, everyone is different on what they can take.
Try a low dose of Prednisone for a while, just to get it to stop any activity of the autoimmune problems. Low doses won't hurt you that much at all.
Advil is not good for your stomach either. But....celebrex isn't so bad, not as bad as aleve and advil for your stomach. But if it works for you, just eat yogurt before you take the advil. If it works, I say take it. Yogurt or whole milk to coat your tummy! Awesome stuff!
Good luck. Keep us posted!
I have had SLE for just about forever. To answer your main concern: yes, you can avoid taking steroids. You can be completely in control of the decision as to if & when steroids should ever become an option. Make this clear to your rheumy from the beginning, that you will only consider a course of steroids when absolutely unavoidable/in a life threatening situation and that the course will have a beginning and an ending. My experience with Imuran was not wonderful. I tried it about 11 years ago, at the time I had vasculitis...cns & brain involvement. It worked right away, until I began vomiting blood nonstop about 4 months in. Plaquenil showed no improvement for me and bad side effects. I treat each involvement for the symptoms and have not taken steroids in over 4 years. I do take Effexor XR (for pain---go figure) Topamax for migraines and nerve pain, synthroid (thyroid) Norco as needed for pain, desowen steroid cream for lupus rashes, actonel for osteopenia...and I have taken a handful of other things off label over the years for various different organ involvements.
Best of luck to you~