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I’m not sure if I should have started a new post or continued on old but here I am anyway. I posted last week that I was not sure what info to take to my Dr. to try to get her to do AP. I decided to send in to RBF and see if there was a Dr. in my area that was already doing and familar with AP treatment and luckily for me there is one only one hour from my house. I called and got a appt. for August 15th. Now I am both excited and nervous. What if this treatment does not work for me. I was just diagnosed with Lupus and Sjogren’s Sydrome about a year ago. I have only taken Plaquenil and cortizone shots in my hips. My Rhumy Dr. wants to put me on Prednisone and other stuff which I took for a few weeks in the beginning and hated the way it made me feel so I made them take me off. I feel like I am getting really bad fast though knees, feet, hands, hips, difficulty getting up from sitting position, brain fog and the list goes on. I have read so many stories on this web site that both scare me and encourage me at the same time. It seems that the earlier the treatment is started the better from what I can tell. Anyway I am going to stay in tough for both help and education. Not to mention support. Most people around me don’t seem to understand because I don’t look sick. Any suggestions I can get for my first appt. with new Dr. would be appreciated….questions to ask etc.
Hi Clong,
Welcome to the RoadBack. There definitely is hope for you. Lupus can be difficult but can be treated. I think the important thing is to discover what medications you can and cannot take and Lupies tend to have more sensitivities. There is some testing that can be done to find whether you have issues with certain metabolic pathways. I don’t have the info at my fingertips but I know there have been some posts in the past regarding testing that can be done at Great Smokies Lab (now Genova Diagnostics)
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