So I saw my dr today, first off I have to say I love my dr. Hes very kind, concerned, talks to me like a normal person and listens to me. Being that he was my first rhuemy I think I got very lucky.
Now the pericarditis has seemed to pass, I have to see a cardiologist on the 7th to make sure. Im still flaring and have been since April and plaquinil is just not doing it. He said that since I responded so well to high doses of prednisone that he thinks I would do well on a DMARD and has put me on cellcept. Hes hoping that it will get the lupus under control. I am so nervous, this is a big thing for me. I had a pill phobia before my dx and have really had to try to get over that but I still get scared. I know I dont have a choice, I keep telling myself that maybe this will be the one to get me functioning, to at least give me back some of my life.
So has anyone been on this?? I would appreciate experiences with this medicine. I start it in the morning wish me luck.
Jen
Well I read up on cellcept, and there is an increased risk of incurable brain infection!! I dont understand why its just with cellcept but for me at this time is not a risk I am willing to take. If it were to save my kidneys or liver then ok. I asked for him to put me on imuran instead there are risk with that one too but at least they are treatable. Im so stressed over this, plus he put me on blood pressure meds to help with the racing heart. I was a liitle concerned because my bp is already liw 100/74 and the meds will lower it more. He said if I felt dizzy or lightheaded to stop it.
In so frustrated with all this, scared and tired cause I didnt sleep well last night. I just want to crawl in my bed and stay there…I dont want to deal with this. I also got my flu shot yesterday and I feel sick like stuffy nose and sore throat. I never got sick from it before.
Thanks for letting me vent.
Thank you all so much for responding,sometimes I feel like I whine too much. I know things could be worse. Im going to start counseling, I think I need to sort this all out with a professional. Thanks for listening.
Thanks Rachel, I will do that. I tried to get an advocate through my insurance but that was a nightmare. Someone who knows the disease would be more helpful. Hugs