need help

I do not have anyone to talk with about ITP. I am so glad to have found this. I had an ovarian cyst burst is when mine started. It took almost 6 weeks to get a total hysterectomy because of my low platelets. I had stage 1 cancer on the ovary which they removed ALL of the cancer. I am 61. My platelets remain very low since the beginning of my problem. I had my surgery 8 weeks ago. I have took pred. 3 times....had 2 n-plate shots (worked the best) had immunoglobulin infusion. Nothing keeps them up. My doctor wants to put me on a drug promacta for life which has a TON of side effects. My body has a bad reaction to everything they have gave me so far. The vaccinations for the spleen removal made me sick. The thing that concerns me is this: My doctor wants to remove my spleen (which he says won't help my platelets) but my insurance won't cover the drug unless he gets my spleen out. I don't agree with that surgery if it won't help because the spleen is VERY important. I don't think he has given my body enough time to recover from what happened to it. I go see the spleen surgeon Friday. I do not feel good about this move on the doctors part. He seems like a know it all bully and likes to discredit any input I have about my care. I think I need to change doctors. I would love to hear from people about my story.
Thanks......vhunter

Hi V, don't let them take your spleen unless you are sure that's what you want to do. Did they tell you that the success rate of splenectomy falls after the age of about 40? A second opinion sounds like a good idea.

Promacta wouldn't necessarily be for life. Some have been pushed into remission by it and spontaneous remissions happen all the time. But there are other things you can try, the immunosuppressants and rituximab are usually tried before a splenectomy is mentioned.

Please seek a 2nd opinion! Personally I did that and it changed my life. Also, I would bring in research and data about spleenectomies over 40.

I take Promacta and haven't had any side effects. I had side effects from other meds so you never know, you might not have any either. You can also look into Nplate.

I used Nplate for three years, had no side effects whatsoever and was able to stop using it with my count sitting in the 80s. Nplate and Promacta are the drugs of the future and certainly the ones with the fewest side effects. It's been brilliant for me.

I agree with everyone here. My ex-wife had an ovarian cyst burst, and that led to the discovery of advanced endometriosis. Several doctors handled her case very poorly, but she finally found a great OB-GYN to work with her.

Have you tried talking to your insurance company directly? Presenting evidence to them can bring about a consult with one of their staff physicians, and that can in some cases lead to an exception/exemption for you. It's a difficult, frustrating process, but it may be another way to address the issue of your insurance company's preference for having a splenectomy before drug therapy.

Two questions:

1. Why did you stop N-Plate if it was working well?

2. Did your insurance tell you that they won't pay for Promacta until you get your spleen out or did the doctor tell you that? I'm asking because when I had Rituxan in 2002, my doctor told me I could only use it if I had my spleen out first. He was wrong and I did use it, with a spleen.

my doctors decision about the n-plate...he wants promacta. My insurance company wants the spleen out and I had to have an infusion to get on the meds. I am in the process of talking to my insurance company. I had a talk with my controlling doctor yesterday-he was upset about me cancelling my surgery. They are NOT removing my spleen.....he can put me back on n-plate.

Good for you for advocating for yourself!

I educate myself - no doctor is going to push me around. Its my health-not his-LOL Still trying to push chemo on me--NOT!
Thank you all for your support and suggestions. I talked to my insurance company today-they won't budge far as me getting on Promacta without removing my spleen. That's messed up!

You could consider N-Plate again since that worked. It works so similar to Promacta I'm surprised your doctor is making a fuss. Usually the main decision between the two is do you want a weekly shot or daily pills?

Keep fighting! Maybe Nplate for now since it works. Sometimes it takes a doctor yelling at the insurance co to get things accomplished. Mine were trying to dispute giving me Nplate the same week as IVIG. The doctor was yelling that I was such a high risk and needed it now. Well it worked.