Tons of questions!!!

I am 31 years old and I was admitted to the hospital on December 16th and diagnosed with ITP. They started me on 140 mg of Prednisone and my count came up to 157,000. The doctors told me I was fine and that they really dont know why I got it but they were sure that the problem was fixed. They had tappered the Prednisone down to 60 mg and I went back to have blood work on Monday the 3rd and my count was down to 59,000. On Wednesday my count was down to only 6,000 so they put me back up to the 140mg. On Thursday I was back in the er as I now have come down with Influenza. So they have decided now that I am not fine and that I need to have my spleen removed. I have been reading a lot of things on here and on other websites and it seems that many people have had ITP for a long time before they have surgery. I havent even had this for one month yet and they want to remove my spleen!!! Im really scared about this and not even sure if this is needed. Please any and all advice and information would be helpful!!!

I think a second opinion would be a good idea. Spleen removal is not necessary as long as you are responding to treatment, and you are. There are quite a few treatment options to try before having the surgery. In my opinion, if a doctor suggests it this soon, they are not familiar with current ITP research.

I've had ITP since 1998 and still have my spleen. My counts have been under 5 on quite a few occasions.

Try not to be scared. It seems scary at first, but ITP is usually manageable and can be controlled.

Ditto Sandi's response re 2nd opinion and even MD's say get a 2nd opinion. I believe it's much to early to consider a splenectomy. But be aware that a splenectomy isn't a guaranteed cure-all! My splenectomy controlled ITP for 10years before failing, for some people it never worked! Regardless of the ultimate decision you should be as comfortable with it as possible. Lot's of ITP'ers live well with low counts but there are also lots of ITP'ers who choose surgery.

One size never fits everyone with ITP. ITP is wickedly scary but knowledge helps to temper that. Take some time to become knowledgeable about ITP and make an informed decision - which might be splenectomy. Post lots of questions here - there's an amazing amount of ITP knowledge and life experiences. ITP covers the world and generally you'll have a response within a few hours. No question is "dumb"!! The first exposure with ITP is a rush of fear, mostly due to limited knowledge.

Julie, you now have a new family, a compassionate family that knows the fears and anxieties of ITP. A family that will share our knowledge and life experiences and help your fight against ITP.

Thank you Steve for making me feel better! Im reading so much about ITP and a lot of it is just making me scared! Im mostly scared becasue I do not have health insurance and I feel that Im not going to get the help I need. Also I was never told by the docotors that ITP is now a life long disease. I have so much going on in my head and I dont even know how to collect all of my thouhgts and questions together. I am lucky that I live in Chicago and there are so many great university hospitals here and I am hopeful that I will into one of them and get treatment there. I am trying not to care about how much money all of this is going to cost but its hard when thts the first thing anyone wnats to know is how are you going to pay for this!! I wish that my health could be more inportant then money!! Im rambling and nto making any sence I think I need to sleep!

Julie - it's normal to take finances into consideration. I had crappy insurance when I was diagnosed and found myself paying a small fortune for Win-Rho. Since it didn't work anyway, I stopped and stuck with Prednisone because it was cheap. I refused IVIG because it was expensive, took too long to infuse and usually doesn't last. There are a few factors in deciding how to treat - money, side effects, lifestyle and efficacy of the treatment all come into play.

ITP may not be a lifelong illness. It can be chronic, but that does not mean you will deal with it on an on-going basis forever. Some people turn out to be acute (under a year) and some have long remissions. For now, it's one day at a time.

Hi Julie,

I was hospitalized just 3 days before you, on 12/13.

I was given 3 transfusions of IVIG and put on prednisone as shown below... if my numbers continue to drop my hema wants me to try rituxan before considering surgery. From what I've read the median half-life of IVIG is 3 weeks so I was a few days past that at my last check, which was the first drop I've had since the transfusions.

Not sure what my count was on admission because the machine only goes to 10k (I was under that).

I would imagine being sick could also cause a drop in platelets, and personally would not want to undergo major surgery so soon after a diagnosis.

Hello Julie, Welcome to the boards. Like Steve said, we're all one big happy family here. Feel free to vent/babble all you want, we all do it at some time or another. February will mark my 1 year with ITP. It's been ........different! I am currently on my 2nd round of Rituxan, we'll see what happens next. My hemo just mentioned taking my spleen last month, I'm not ready for that yet. I'm thinking with anything over 30 I'm safe. Do you have symptoms, bruising, petechiae, bleeding? I've been fortunate and don't bleed much, that's why I'm comfortable with anything over 30. Please post often, we enjoy hearing others stories!

Things are looking up for me, I went to the department of public health and I am now covered under Medicaid. I went to a new doctor today that will now be my PCP and he is referring me to a new hematologist and he thinks that surgery can wait. My count was at 75,000 on Monday. I am still taking 140mg of Prednisone however. I am hoping now that i dont have the added stress about money that I can take the time to get informed!! Thanks everyone for listening!!

That's great Julie! Keep coming back with all your questions (there will be lots) and you can always vent to the board when you have a mini anxiety attack (we all do it some times!)

woohoo! I'm excited for you! I know it's a relief.

You might want to talk to the new hema right away about that monstrous dose of pred. I think it was one indication that your previous hema didn't have much experience with ITP. My doc's idea of a big dose is 40mg/day, and perhaps that is one reason I've not had the terrible side-effects many have suffered.

(I'm also a failed splenectomy--and though I've not suffered from not having a spleen, I wish I had waited until I knew more--and had tried Win-Rho.)