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Re: Aps
Feb 4, 2006
I agree! It's so complicated with just Lupus. I am not sure if having Ra and SLE automatically label the Rhupus, I had never heard of it before either. I just know that my new rheumy says that people get labeled with Lupus and all those hot, painful joints are swept under the rug as the old "lupus flare". Their doc is actually missing the other diagnosis because they are so stcuk on the SLE. I do know that a [U]specific[/U] combination of drugs is specific to Rhupus. I have been on Plaquenil for a long time and he is planning on taking me off next month. He says that Plaquenil is great for [I]most[/I] patients but for "Rhupus" it is considered too mild. There are a variety of drugs that treat both diseases and hit them hard. My other rheumy was always so gloomy about my prognosis, this one is so excited and optismistic. He has a very positive attitude and says that he loves a challenge. He just sweeps through my labs and says that it all makes sense when you look at the big picture. He said that Rhupus is the hot topic among rheumatologists -ones that keep current, that is!
The key with our disease is to monitor, monitor, monitor. We must have the 24 hour urine tests done on schedule, drink 2-3 liters of water PER DAY, and balance our meds. He believes in taking the least amount of meds with the most results. He said that he promises to not sacrifice one organ to save another. Makes sense to me! The other guy was going to start me on Remicaide IV infusions and this new one had a fit. He said that he would like to leave my liver alone and only use that as a last resort. The Enbrel is working so well for me. We know there is a chance of producing Lupus antibodies, but he said we would handle that immediately if that happened, which is rare. As far as the steroids, I am weaning off them and will only take them as needed or for the proteinuria, etc. He said that they are more effective to take for flares in moderate amounts, like for a week, then everyday like I have been doing.
I hope that you are on the right track and are stopping the progression of these diseases. Do all you can to get your life back!
This board is a great start to learn. My rheumy says that experienced patients know more than he ever will. How true!!!
Leslie :wave:

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