Nowhere to turn

I was diagnosed with ITP two weeks before Christmas. For weeks, I had been bruising, I was getting blood blisters in my mouth, and my mouth would even bleed just from something as simple as eating a piece of bread. I would come up with every excuse in the book not to go to the hospital (too many bad experiences there), until one night I was playing with my nephew and I went to pick him up and my wrist got covered in black and blue marks and then I went to take a shower and I had gotten at least five black and blue marks from that! My mom immediately rushed me to the hospital, where the dr acted like nothing was wrong, in fact she almost sent me home! The nurse who looked at my blood work noticed that my levels were at 2000, the dr said if she would have sent me home I would have bled to death by morning. Ever since then it has been beyond a frustrating journey. I was on Prednisone for 6 months. Everyone knows how prednisone is, the weight gain, the mood swings, and all that lovely stuff. Prednisone worked while I was on it, but when he took me off my levels went from 183000 to 46000. We've tried the Iv treatments, and sadly they didn't work. Now he wants to do chemo or spleen removal. I've hit such a bad depression in dealing with all of this, and have no one to talk to that knows what I'm going through. My mom has been such an amazing support, but I don't want to worry her with my fears. I'm grateful that I only have ITP and it's not cancer or anything like that, I don't want to seem like a brat when I cry over this, but it's frustrating and scary. I just feel like giving up so much anymore, This has drained me emotionally and mentally.

Cole:

You came to the right place. There are still quite a few treatments to try and it is no where near time to give up yet! You haven't even gotten to the better treatments yet....the first line treatments often are a bust. I do think you need a second opinion.

When you say you've had IV treatments, are you talking about IVIG? That is known to be a very temporary treatment and not good for long term. It's just a rescue treatment to bump counts up. When you said "chemo", which treatment are you referring to?

Ive had 8 ivig treatments. He had mentioned about a non steroid medicine before, but hasnt brought it up in a while, im not sure if it's cause of my insurance or what. And i cant remember what chemo he said (im terrible when it comes to remembering things) my mom wants me to get a second opinion as well, but im hesitant. I dont want to go to for a second opinion and have that dr make me do the same thing all over again.

Cole:

Here is the secret. You can take control of this. You do not have to do what the doctors suggest. No one can make you do anything. That sounds horrible, but what I mean is, you can have a say and work as a team. You need to become familiar with the treatments and make suggestions. You need to become more involved and remember what they say. Write it down if you have to.

I think when your doctor said 'chemo', he probably meant Rituxan. It is not actually chemo, it's a monoclonal antibody/biologic. Have you seen the commercials for Humira, Enbrel, Orencia? That's what Rituxan is and it is a common ITP treatment. It can have side effects, although most people do just fine. You will not lose your hair or have any of the typical side effects that people have with chemos. The only reason some people think it is chemo is because it is used for certain types of cancer.

When your doctor said 'non-steroidal' med, he probably meant Imuran or CellCept. Those are strong immunosuppressants but do not have the same side effects as Prednisone. They are not usually all that expensive so it shouldn't be an insurance issue. I've taken both.

Start reading the threads on this site. See the experiences of others and learn about the treatments. There is no one treatment that works for everyone, so most people keep trying until they find the one that works and the one they can tolerate. Many people go into remission so this is not necessarily something that will go on forever. It does require patience though and it requires knowledge.

And when the doctor said you'd have bled to death overnight, that wasn't true. So don't worry about it.

And if you are terrible about remembering things take someone with you or write things down while you are in the office, if you don't understand then have the doctor repeat.

Is your doctor a hematologist?

My main question is - were you tapered off of prednisone when you reached 183,000 or did your doctor tell you to just stop taking it?

It's your body - you are in control.

Agree.. you are in control and do not be bullied into having your spleen out.

Cole,

Are your platelets still at 46,000 without current treatment? If so, you do not need to treat at least until your platelets are below 30,000 (those are the guidelines), and many here do not treat even at much lower platelets. As you have learned by now, the treatment can be harder than the disease.

You mentioned feeling depressed. Did anyone tell you that depression is a side effect of withdrawal from steroids? The withdrawal from prednisone can be harder on your emotions sometimes than the treatment, and can last longer than you might expect. That will get better, and the ITP will play a smaller and smaller role in your life as you become more knowledgeable and get some good support; this is the right place for both!