I'm a 58-year-old white female who has had S.L.E. for approximately 35 years. My primary manifestation is severe and debilitating nausea. I also now have heart involvement and am pacer dependent. I have an excellent gastroenterologist. He and other doctors have said that it's a very difficult case to treat. It is unusual as it is marked by very few remissions and has become drug resistant. On a typical day I will wake up with severe nausea, and it sometimes lessens after 3-4 hours. I can feel perfectly fine and am able to eat and drink. However, that period of time is always short lived and may only be 30 to 40 minutes. I may or may not get a period of "well time" in the evening but lately this has not been the case.
I will try to keep my treatment course and history short. I have been successfully treated with various I.V. and oral chemotherapy drugs. The most successful course of treatment were the antimalarials, specifically Plaquenil and Aralen. I've also taken Prednisone and every anti-nausea drug (i.e. Phenergan, Marinol, Zofran). I have had no success with these nausea drugs. I don't believe that there is anything new or that they would be of benefit to me. I have used Enbrel. After the initial injection, it provided only two days of relief. Not only is it cost prohibitive; but when I took a second injection, it did nothing.
In 2005 I experienced a full remission for a period of nearly three years. I believe that it was possibly due to menopause and hormonal changes. However, I did not realize at the time that I was starting to develop heart involvement. The symptoms were very subtle. The nausea started to come back in 2009, and neither my physician or I had any idea why. The nausea has returned and is more severe than ever. Over the course of my disease, I have been to Stanford, Cedar Sinai and U.C.L.A. and have seen a number of gastroenterologists and rheumatologists. They are all in agreement that they do not have an explanation as to why my primary symptom remains severe and debilitating nausea.
I have been a member of lupus groups and have been in contact with the L.A. chapter. There was one girl who had similar symptoms but not nearly as bad. My husband suggested that I post this message and see if I can get some ideas or help. I have already tried alternative therapy including acupuncture, vegan diets, hypnosis and vitamin therapy including high doses of ginger with no positive results. Of course, I am miserable but I am fearful that I will end up in the hospital as I have in the past due to dehydration because it is difficult to drink water or any other liquids.
Thank you in advance for any positive and constructive suggestions.