tag:blogger.com,1999:blog-8508532915941866475.post6635060125880825673..comments2024-02-01T01:57:33.808-06:00Comments on FSGS Sucks: Update on latest clinical trial : FSGS SucksStoraloppanhttp://www.blogger.com/profile/13162542951417469191noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-8508532915941866475.post-81266456943346498512013-01-04T12:44:25.078-06:002013-01-04T12:44:25.078-06:00sorry to hear things aren't starting off bette...sorry to hear things aren't starting off better for you in 2013 :( <br />Here's hoping things improve for you soon. I know how tired you must feel. I find it frustrating that overall, I look healthy but have to deal with all the side effects from the medicine i take everyday. I think people forget that I'm dealing with a chronic disease. <br /><br />I suffer from MCD. I relapsed last year after being clean for 5 years. I have not been able to achieve remission... next appointment is next week. I've been on Tacrolimus, 10 mg of pred. and a host of other meds for well over 7 months. My doctors are thinking of rituximab if my protein hasn't decreased. Of course it scares the crap out of me to read some of the side effects. But I am kinda done with the tremors, headaches, diarrhea and feeling crappy all the time.<br /><br />Anyway, thanks for your blog. It's totally crappy that you have to deal with FSGS everyday but it's nice to know I am not alone in dealing with this disease. <br /><br />kat@taylormadedesigns.comkat yarrantonhttp://kattmd.typepad.comnoreply@blogger.comtag:blogger.com,1999:blog-8508532915941866475.post-60889225766559351082013-01-04T06:54:30.623-06:002013-01-04T06:54:30.623-06:00I agree about how obnoxious it is to get copies of...I agree about how obnoxious it is to get copies of records - our local big hospital system has an online option to see your results. Problem is you have to use THEIR labs and doctors, and their labs are not covered by our insurance. (I worked for them for the year I was doctor-free, so I never got to set it up before I left!)Rob Monroehttps://www.blogger.com/profile/15213481414668281312noreply@blogger.com