MNsue Posted May 30, 2006 Report Share Posted May 30, 2006 I have finally found a doctor that seems to understand the big picture with my illness. It has come after 15 years of looking for someone to diagnose the crazy autoimmune issues I have had. Today and tomorrow, I will have 1,000 MG dose of steroids. I will repeat this in another month, and will have one more in two months. The goal is to explode the T-cells that are doing damage to my autonomic nervous system, and then re-grow healthy T-cells. I will also start an immune therapy drug that will take about 6 weeks to kick in. This steroid treatment has the least amount of side effects long term. It clears the body in 24 hours, and has not shown bone loss. I have a strange combination of blood work that does not point to a specific autoimmune disease, but because I have improved with steroid use in the past, he felt this was an appropriate therapy. He treats a number of dysautonomic patients and has had a lot of success with this and IGG therapy. This has been a wonderful gift, because last week, Mayo Clinic declined to see me (after waiting 4 weeks for them to review the file my MD sent over). You would think they might feel a little bad for missing the dysautonomia in my last two visits, and grant me a visit with Dr. Low, but I guess that is not going to happen. I am hopeful that this will keep my illness from getting so bad. I am feeling a bit high from the steroids today, but it will be worth it if I can get better. I hope this info can help others. I will keep you posted.Rhonda Quote Link to comment Share on other sites More sharing options...
worththewords Posted May 30, 2006 Report Share Posted May 30, 2006 This is very interesting. Please keep us posted on your progress. Good luck.What type of doctor did you see that determined this? Is this supposed to help POTS? Any further info..I'm curious! Quote Link to comment Share on other sites More sharing options...
ellen Posted May 31, 2006 Report Share Posted May 31, 2006 Rhonda, please keep us posted- it's so exciting to find a doctor who can look at this illness with a fresh approach. wishing you success, - ellen Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 31, 2006 Report Share Posted May 31, 2006 Rhonda,I too am glad you have a physician who is trying to help you get to a better place.Keep us posted and good wishes...tearose Quote Link to comment Share on other sites More sharing options...
nadine Posted May 31, 2006 Report Share Posted May 31, 2006 I wish you best of luck with your treatments. Has anyone had a negative experience from corticosteroid use?Last year I was prescribed Medrol after inner ear trauma and I really believe that is what did a number on my body. I haven't been the same since. I had multiple reactions and all the orthostatic problems increased as well as balance ,walking and muscle problems to mention a few. Quote Link to comment Share on other sites More sharing options...
MNsue Posted May 31, 2006 Author Report Share Posted May 31, 2006 I wish you best of luck with your treatments. Has anyone had a negative experience from corticosteroid use?Last year I was prescribed Medrol after inner ear trauma and I really believe that is what did a number on my body. I haven't been the same since. I had multiple reactions and all the orthostatic problems increased as well as balance ,walking and muscle problems to mention a few.I have heard that some people to react to steroid with muscle weakness. It is one of the more serious ones to watch out for. I think the steroid use make sense for me because I have responded well in the past to steroids, and I have a long personal and family history of autoimmune disease. I don't think it is for everyone. The immunologist did say that he has had very good results with IGG therapy as well when the steroids don't work. Rhonda Quote Link to comment Share on other sites More sharing options...
calypso Posted June 1, 2006 Report Share Posted June 1, 2006 Just curious -- which steroid drug are you taking? Are you taking it orally?Amy Quote Link to comment Share on other sites More sharing options...
MNsue Posted June 1, 2006 Author Report Share Posted June 1, 2006 He put me on 1000 mg of IV solo-Medrol for two days. I will go back in one month and have another 1000 mg administered via IV. I had the last one done yesterday, and can feel the side effects. They are not terrible. Quote Link to comment Share on other sites More sharing options...
nadine Posted June 1, 2006 Report Share Posted June 1, 2006 Thanks for your response and I hope this is a positive treatment for you! Quote Link to comment Share on other sites More sharing options...
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