Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Hi Everyone, I am back and receiving e-mail from the group again. Right now I need this group more than ever. I am in the middle of the worst flare I have ever had. I received my 3rd set of Rituxan infusions in November. However since I had a new fellow he gave me 2 infusions of 1000mg each of Rituxan instead of the four infusions of 700mg each of Rituxan. Which amounts to me receiving 800mg less of Rituxan in November than I had in May 2007 and Oct/Nov 2006. The Rituxan started wearing off in January and quit working all together at the beginning of March. Also in January I started having cramps everyday caused by my endometriosis. So on Tuesday I saw my OBGYN and she told me that I am to the point where there is only one option left is a complete Hysterectomy and then feed me back Estrogen to help control my Still's disease. This did not shock me, and I have been prepared for over 2 years to make this decision. I told my OBGYN that I hoped to be able to receive another dose of Rituxan to help start lowering my Still's symptoms then go in and do the surgery the first of June when my mom is on summer break from teaching school. My OBGYN agreed and I was supposed to schedule my surgery today. Then I went and saw my Rheumy at the University of Michigan on Wed. By the time mom and I made the hour and a half to 2 hour trip to Ann Arbor I was getting very sick. When they called me back to the room not only was my pain level at a 10, I was nauseated, dizzy, had a fever and I had a rash starting. My blood pressure was also high (for me) and my heart rate was abnormally high for me as well. The nurse was very worried about me and my fellow said oh well we may need to send her down to the ER. (My thoughts were " Your a doctor why can't you treat me. " I don't like this guy who has been my new fellow since July of 2007. Also this guy is the most unaccessible doctor I have ever seen.) Anyway they did an EKG and that came out fine so the fellow said to me " your ok. " I was laying on the exam table laying in as much of a curled fetal position as my joints allow (which isn't much). He saw evidence of my dizzyness and nausea, but he did not care. He still told me that " Well I don't know what you have so I am no longer going to treat you " . Then he went and brought in my Staff doctor that oversees my fellow and he told me the exact same thing. I asked about another dose of Rituxan only to be told that I have received over my Lifetime limit of Rituxan. Plus they said they don't believe it works for me. Rituxan when given 4 infusions (1 infusion per week for 4 weeks) with each infusion given me 700mg of Rituxan I can go for 5 months with my pain level at 4 to 5 on a 10 point scale and very few fevers as long as I am also on the MTX. Also the Rituxan controls my other symptoms as well. So My Staff Dr. told me I should go to The Cleveland Clinic for a second opinion. I said " NO! I have already been there and they did nothing to help me. Plus the doctors treated me horribly. You guys were my Second opinion! " They looked at me like I was insane. Then they started doing the uh, uh, uh well maybe we should send you....to Northwestern University Medical Center. I said fine are you going to call them and tell them you have a patient you wish them to see and you need another opinion. I was told " No. You have to call them and get you an appointment. tell them the University of Michigan sent you for another opinion. " I thought to myself " yeah right like Northwestern will believe me. " Then to close out the visit I asked if there was anything they could do for me now to help take care of the pain, swelling, stiffness, fevers, rash, nausea, dizziness now. I was told to just keep taking percoset on top of my Duragesic patches and Muscle relaxants to make you feel better and we will see you in 6 months. End of appointment. To say the least I was Angry, I was hurt, and I broke down once I got to the car. I begged my mom to get me something to drink so I could take a Percoset, Flexeril (muscle relaxant), and a Phenegran. That put me into a drug induced sleep so Mom could get me home. Sadly I am often in some drug induced haze because that is what it takes to keep me out of the ER. Now I don't know what to do. I know s Hopkins had done some research on AOSD (which I am still convinced I have) and my best friend lives 70 miles from s Hopkins and I could stay with her and her husband if I go there. Of course I could try Northwestern like my Rheumy's suggested. My PCP told me Ohio State won't get me any further than the U of M got me. Since she graduated from Ohio State's Medical College I assume she knows what she is talking about. Plus I trust my PCP completely (She has known me since I was born. Her brother and my Brother are best friends and my brother was a year behind her in school so they all hung out together). Also I don't know if my body could take the hysterectomy and recovery without something to help the Still's in the process. First of all If anybody has any advice for me I would appreciate it. If anyone knows of a top rated medical facility in Auto-Immune Diseases please let me know. Second Those who have had hysterectomies could you please give me some idea to how rough the surgery and recovery is on your body. I think my PCP and OBGYN are going to run tests to determine how strong my heart, lungs and whatever else they test to see is a person can handle major surgery. Emotionally we all know I will fight, but I need to know if my body has the strength to fight. Third Please pray for me and my Family. My SSI hearing should be in July and I don't know what will happen with the U of M now saying they don't know what is wrong with me and they are no longer treating me. Also my parents are starting to get worn down from helping me. I can barely get out of bed by myself, and there are times I can't get out of bed without help. Please Pray. Well I guess that is it. Welcome to the Newbies since January 2008. And to everyone else I hope things are going well and everyone else is having a Pain Free day! Take Care, Fayette, OH __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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