Welcome to the forum and to my neck of the woods. I visited your rheumatolgoist for a second opinion once if it is Dr. DeH. My sister in law used to work for him. I am 47 years old, have had lupus since I was 15years old and kidney disease since I was 28.
I do have kidney disease and I have been off of prednisone for 10 years. I too never thought that it would happen. I've done prednisone, prednisone with cytoxan, tried imuran, and I am now on Cell Cept.
My lupus was in remission for the past 10 years after undergoing a treatment in Germany known as the Kiel Synchronization protocol, which is how I got off of the prednisone. My kdineys have flared again recently, although not as bad as before. I am currnetly on Cell Cept only 2000mg per day...trying to avoid the prednisone. I'm hoping the Cell cept alone will do the trick. I do not know if there is anyone else that is on Cell Cept without prednisone as most rheumatologist in the United States keep lupus patients with organ involvement on some type of immunosuppression. My clearnance is normal, my creatinine at 1.03, but protien at 1400mg. Following my treatment in Germany my protein was 150 mg. My rheumatologist had wanted to start prednisone again, but I asked if we could just wait and see the the Cell Cept alone could do the trick. He's allowing us to wait, at least for now.
I did fosamax for a short period in the past however was taken off of it because they do not know what the half life of the drug is. My gynocologist said that he would never take a drug that he did not know the half life of. My dexa scan has not shown any osteoporosis at this point for me. I would think that if your kidneys may be flaring you may have to be careful with such medications for the treatment of osteoporosis. They are hard on the kidneys. I have been taking vitamin D, 1000mcg daily along with my Calcium.
I did do acupuncture when my kidneys flared years ago. I was amazed at how within a few hours, my leg swelling was gone. I had no muscle problems following it. My acupuncturist was not sure he could help me because he said he could only feel one of my pulses and if he did not see me sitting in front of him he would not have believed I was alive. So I did not feel he was the best person to help me, thought initially that maybe that meant I was going to die...but here I am still here 12 + years later. I've not been back to an acupuncturist since. I went for some Auyvedic treatment and was told the same thing about the pulses. The Auyvedic doctor had me do a metabolic cleanse which I did. I believe that cleanse is what put my kidneys into the flare I had 10 years ago. I decided that alternative shopping was not for me...that I needed to stick with the specialists that know lupus.
I had tried to get into some research trials at the NIH 10 years ago but was not a candidate. Johns' Hopkins high dose cytoxan was fairly new with not many people treated yet, stem cell transplant I was not a candidate for either, so the treatment in Germany was my best shot for treatment free remission so I did it. I had already done the NIH protocol and did not want to do that again. I thank God that for 10 years I've been in excellent health.
Today , though on Cell Cept, I feel very blessed because I do not feel sick at all. I continue to work full time, have no joint pain which many lupus patients suffer from, no fatigue either.
So, hang in there. You are in good hands at Jefferson. He is an excellent doctor. It is possible to get off of prednisone when you have organ involvement...I'm proof of that. I do hope it continues that way for me. I may be an experiment in the making, being on Cell Cept with no prednisone. Have not found anyone who was not on any at all with the start of their treatments for organ involvement.
Keep us posted on how things go for you. I wish you the best of luck. You certainly have been through alot.
Thank you all for your welcome and sharing experiences with me. I was on the computer to get directions to my nephrologist and noticed I had some email from the forum. After I posted, I talked to my best friend, who is also a critical care RN(we met when we were both working in an inner city, Level 1 Trauma Center, so we've been through a lot!) I'm going to go 2 more times to the acupunturist and if I feel like I did today, that will be it for the porcupine! My PCP wrote for water therapy which worked wonders for both my lupus and fibro in Florida and the hospital where my husband starts his new job in 2 weeks just opened a medi-center/gym which has a therapy pool. So insurance will pay for x number of sessions, then I'll join the gym at a very discounted price and continue my therapy. We wanted to put in a pool this summer but the way the economy is, we're putting it off til next year. It will be heated too.
I think that chloesmom will be staying here for a while!