thanks nhmas, I am getting that feeling myself and he did not recommend entocourt and I wonder why? I have mild colitis and don't really think at this point immuran would be the best course for me. I am now really worried about
side effects that cause diseases. I would recommend asking for a urinalysis to check the proteins.
Old Hat - I definitely want to review my medical records and not sure if I can get copies of them, but would like to put the whole experience into a timeline to figure out when I first went for the edema and number of times and see if they actually wrote it down each time I went. Then I would like to bring this to the appropriate person's attention and hopefully get them to make some changes. (not sure how to go about
doing that yet).
In continuing to think about
this, there really should be a database where you can cross reference prescript
ions with symptoms and diseases to find out this kind of stuff yourself. I mean, how do you check every single symptom for renal disease.......that could take a very long time...not that it's not worth it but i'm sure most would get frusterated and give up long before finding all the info. Plus if you are not educated for it, you may miss things that a trained professional could see.
Also, before getting pregant all GI's should be doing a urine analysis for their patients to check for this. If I had gotten pregnant, I could have lost the baby, had pre-eclampsia and other possible conditions and may have had problems even conceiving.
The more I think about
this the angrier I get that no one took my edema seriously.....it's a warning sign for kidney problems. Sounds like medicine 101 to me.
My goal right now is to get better, educate myself and also to bring this to the attention of my Dr's, the place where I see all of them and also my insurance company. I want them to know that I know and that in the future, they need to listen and take better action.
I had a friend in high school and she had heart problems and she was supposed to go for surgery in March 92, then they told her they had a more urgent case and pushed her off until May 92......she died in April 92, she never made it. I had forgotten the full meaning of an important lesson I took away from that, being your own advocate, I have said it hundreds of times since then but only when I was first dx'd w/UC when they wanted me to wait 3 mos to come in and I explained that I had toilet bowls full of blood and did not think I would survive (they got me in the next day) did I really stand up for myself up until recently.
I recommend everyone on 5ASA ask for a urinalysis......doesn't hurt to pee in a cup!
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.