8 months of Predisone

My name is Bernice. This is my first time posting. Been using this website for information sense 1997 when I was diagnosed. My platlets stayed steady at 64,000 . Although I didn’t have them checked regularly , Last MAY I was injured at work and buried pretty badly on my face. I knew my platlets were low. Went to emergency and and suggested they check them and they were 11,000. Went to my hemotgist and he put me on prednisone 40mg. Was winged off a few times and count went down, typical for this drug. Dicided to try Rituximab and it didn’t work This is a very costly treatment. Have been on Prednisone for 8 months. It effects me in that it makes very hyper and I dont eat much. I know don’t hate me. My hemo doctor wants me to have my spleen removed. I don’t want too sense I work in an elementary school. I’m scheduled to see a nathurpactic Jan 15th to see what he can do to help. Very tired of being on prednisone and taking meds to go to sleep. It’s effecting my work concentration and my mental health. I think my mind and body are tired and I’m not slowing down my life. People don’t see ITP and dont know your still battled it. Feeling discouraged and alone. Am also weaning off an anti depressant that maybe the reason my platlets are low. My hemo doctor never looked at my prescription list or perhaps he would have told me to get off it. My second opinion hemo doctor advised I get off of it. I’m the one who brought it to her attention and showed her all the meds I’m on. Tired of not having people understanding my conversations.

Hello Bernice. It's really unfortunate Rituxan didn't work for you. Did counts go up for a month or two but then fall down, or something like that?
I assume you've never had IVIG treatment. Have you thought about Promacta or Rituxan for a year? Some folks can go into remission with them.

Bernice glad you posted! There are a lot of supportive people here who have years of experience with the treatments. You are not alone. If you are not ready for splenectomy or like you said, are exposed to too many germs, I would suggest you try Nplate or Promacta. They are drugs that were designed for ITP. They work very well for most people and don't have the terrible side effects of prednisone. I am on Nplate which is a weekly injection that I get in the doctor's office. Its really easy for me and no side effects! I love that. Promacta is a pill that you take once a day- people have had good results with both drugs.

8 months is a long time to be on prednisone, no wonder you are tired of it! It made me crazy, irritable, bloated, sleep apnea, gained 30 pounds- and later found out that it caused bone thinning. It can cause all kinds of mood changes. I had some depression when tapering off as a withdrawal symptom. When you find a replacement drug, remember that your adrenals are dependent on prednisone so you MUST taper slowly. It could be life threatening to go off of it too fast. good luck finding the right treatment!