I've have lupus for almost 18 years. It has been a very trying time for me.
Lupus has taken over my life and I wonder if I'll ever get it back.
I have SLE. My body has been attacked in many ways, I won't go into all that now, but the one I'm most concerned with right now are my kidneys.
My kidneys are only functioning at 19%. It scares me to death to think I could lose my kidneys. I don't want to go on dialysis or have a transplant but it seems like thats where I'm headed.
I've tried cytoxan, but became deathy ill with it, tried cellcept but could not tolerate it, it made me very weak and ill feeling, unable to do anything.
Does anyone have info on other meds that might be helpful fo me? Do you know anything about mirac or **************?
Thanks for your help.
Hello.. I am so sorry for your pain that you have been experiencing.. I have had SLE Lupus, Fibromyalgia and several other symptoms for the past 14 years. Although they just diagnosed the Lupus part 4 years ago. I am not too familiar with the Kidney side of things because I haven't gotten to that stage yet. But I do know for Lupus in general I take Plaquenil, and Mirapex. they both seem to work for me although it's not a walk in the park I do have very little energy everyday and wonder if any drug will allow me to get my life back. I hope that you are going to good doctors as I have found that to be really important, I have had to weed through several before finding the right ones.. I will do some research for you and ask mydoc the next time I go in to see if I can't get you better answers.
Have you ever thought about going to a naturalpath? I am tempted as my aunt has the same symptoms I do and she went to a place in San diego for 3 weeks Optimum health Institute she went down there while being on 9 medications and now that she is back she is down to 0 and feeling better then ever.. It might be worth the trip..
I take plaquenil but am not familiar with mirapex. I did meet with an naturalpath at one time and tried what he recommended but wasn't seeing any results. Maybe if I stayed with it a little longer it might have helped, but it was just to expensive, you know as well as I that meds are not cheap and when you are taking several it really drains the finances, add to that everything the naturalpath wants you to take.
Just a comment on part of rosta's post. "I am not too familiar with the Kidney side of things because I haven't gotten to that stage yet". I might just be reading this the wrong way, but just to put your mind at rest, it is not always the case because we have 'systemic' lupus that we will go on to develop kidney problems.
Not all SLE patients have kidney involvement, though it is thought that around 40% of lupus patients do have. Not all of these will require treatment, and some might require aggressive treatment. It depends on the type of kidney involvement a patient has.
Pain in the kidney area can also be an indicator of other things happening. For instance you may have pleurisy, a kidney stone, kidney infection or even a muscular spasm coming from the lower or lumbar spine. Only the pleurisy in this case would have anything to do with lupus. If you do get worried about the possibility of kidney involvement, then you must visit your doctor to have the proper tests carried out if he thinks this is necessary.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 04-17-2006 at 04:54 PM.