Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 YES, and they are very toxic and dangerous to your joints. I'm only 43 and due to IV steroids, they want to replace one of my hips. It also has caused havoc in other friends who have had to have iv steroid infusions......not to mention ball players like Bo......gosh, what's his last name. He had 3 courses of iv steroids and had to have both hips replaced, one knee and a shoulder. ni Atlanta Alpha one antitrypsin deficiency with associated severe Panniculitis. 04/07 Has anyone here used monthly iv steroid infusions? Since oral steroids and plaquenil are not doing enough to keep EN at bay, my doctor is talking about using this treatment. They are sending me to an infectious disease doctor for his opinion on this as well. I just wonder about the side effects as compared to oral treatment.Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Hello...I am new to the group and have a question. First...a little history. My first case of EN was in October 2009, though it was not diagnosed as such until January of 2010. I started getting small, but painful red marks on my legs and arms. I was receiving IV iron treatments at the time and was told to take Benadryl because it was probably an allergic reaction to the Venofer (iron). After the second treatment I was in so much body pain that I could not get out of bed. At the time, I did not know what was happening to me. I stopped the iron after the third treatment. The pain and red marks did not go away. No doctor was able to tell me what was going on. I diagnosed myself (thank you internet) and it was confirmed by a Dr. in January of 2010. Fast forward...no course of treatment has helped...prednisone, iodine, diet, etc. I do not seem to struggle as much with the red marks/nodules...they are painful when I have them...most recently brought on by a tooth infection, but the worst part of it is the body pain that lingers. I have been in pain now for 2 years. The first year was the worst...all my joints seemed to swell and hurt. This past year I had what I guess is a remission. I had to have back surgery and it turned out to be a blessing in disguise. The day after the surgery all my body pain from the EN was gone. I was recouperating from my surgery when I had a tooth infection. It brought on the red marks again and the cycle began again. I have been in body pain since the beginning of August now. So, my question is this...my doctor says that the horrific joint pain is not Erythema Nodosum. EN and joint pain is only EN if I have the red marks and nodules. I keep telling him that the horrific body pain ALWAYS starts exactly 5 days after the red marks appear...the red marks gradually go away, but the horrific pain remains. Is the joint pain EN? I have had tons of blood tests done...all are negative for any kind of arthritis, auto immune diseases, etc. Doctors cannot explain the pain or give me any kind of medicine to stop the pain. I am currently taking 150mg of extended release morphine 2X a day and 4mg of immediate release morphine for break though pain. I am also on Neurontin and Skelaxin for my back. Prior to the EN I led an active, fulfilling life. I was into all natural/organic/whole food nutrition. Currently, I struggle to get out of bed. I am unemployed, waiting for disability. However, I do live a joy filled life. Thanks! Lilian Quote Link to comment Share on other sites More sharing options...
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