ITP newbie and SO CONFUSED!

Hello! I was diagnosed about 3 months ago after almost passing out from loss of blood after a 2 1/2 week long period. I left the hospital with 126k platelets and was put on 10 mg of prednisone. After 3 weeks the dr dropped me to 7.5 mg and my platelets dropped with it but eventually held steady at 108k. So Dr. decided to try Rituxan, but unfortunately after just a few drops my throat started swelling. The following week my platelets jumped to 136k which she said was from the teeny bit of Rituxan I got. Is that possible? So she dropped the prednisone to 5mg and the next week my platelets were at 43k. So now she's wanting to do IVIG, if that doesn't work NPlate, if that doesn't work splenectomy. I have no idea what's going on and everything is moving so fast. I guess I'm just feeling like she's waiting for me to ask questions to inform me, but how can I ask questions about something I know nothing about? She stresses the need for me to get off prednisone asap so we need to fix this NOW. I have no idea what is going on. I feel like one minute I was in the ER being told I have ITP, and the next I have a hematologist who is talking about removing my spleen. So, I guess, my question is if there is anything else I can do before the whole spleen removal? I feel fine, is it really THAT serious? What exactly should I be asking my doctor? How do I get my old life back? Sorry, had to throw that lasted one in there.

I would be confused if I was you, too. There are some things that are a little out of the ordinary in your story:

1. how did you get to 126K platelets in the hospital? What treatment was given to you?
2. 10mgs of prednisone is very little. It's much more common for initial doses (for ITP) to be 40-60mgs or even higher depending on your weight.
3. With Rituxan, it's not uncommon for there to be a slight allergic reaction like throat getting scratchy or starting to close up. Typically the infusion will be stopped, the patient will be given benedryl, and then the infusion will begin again more slowly paced.
4. 43K is not a bad count, and I'm not sure why your doc wants to try additional tx before seeing if it drops lower. ARe you sypmtomatic at 43K (bleeding/heavy bruising/other)?
5. You can be in control. If you're not comfortable moving through treatments so quickly, you can say you want to slow down. You can also ask for a second opinion or just switch doctors.

PS, I've had ITP for 15 years. My platelet count yesterday was in the 50s and I am not on any treatments (and probably won't be unless my platelets drop into the teens.

While I was typing, Tamar was posting, and I agree with everything written.

Yes, there is a lot more you can do before letting them remove your spleen... and remember that you call the shots, not them! Your spleen is an important part of your immune system. Splenectomy is far from 100% effective; it exposes you to increased risk of certain infections; it requires lifelong vaccinations against certain disease; it exposes you to increased risk of thrombosis. Splenectomy is being performed less and less as better alternatives arrive, and some ITP specialists are no longer doing splenectomy at all.

At 43k there is no need for you to treat. 30k is the commonly accepted threshold, but it is better to treat based on symptoms, not counts. Numbers of people do not treat except in single digits, if at all. Speaking of symptoms, the ladies here can give you some good suggestions on reducing monthly flow.

IVIg is a rescue treatment. The effect is temporary. It generally does not produce remissions, and its cost and side effects make it an unrealistic long term treatment. It may be, though, that your insurance won't pay for Nplate until IVIg is tried.

Nplate has an excellent success rate. It can take some time to find the right dose. The target should be to keep your counts as close as possible to 50k. Normal is not the goal, as it increases the risk of clotting. The goal is to keep counts at a safe level.

After Nplate there is Promacta, which is similar to Nplate. Sometimes one will work when the other won't. It comes in pill form.

After that come the older drugs, of which there are many. They are listed at the tab at the top of the page under "Treatments".

Thank you both SO much! Everything you both have said is similar to what I have read so I was confused as to why she was making it seem as though I had an emergency case. When I went into the hospital my platelets were at 15. They gave me a "platelet transfusion" and some steroids and that is what brought my platelets to 126. I did have severe bruising before the hospital, but have not had any since. So my absolute only symptom is low platelets. I am tired a lot but that could be from my kids. Lol. I've been told that she is one of the best doctors out here, but I can't help but get the feeling that she is as confused as I am. She pointed to a red dot on my arm that I've had my whole life and told me that that was petechia. I'm still going in once a week for CBC and am due to go in on Wednesday, so I guess we'll see what happens. I'm pretty sure my platelets will have gone up since she pushed me back up to 7.5 on the prednisone. I think I will ask to drop to 5 for longer than a week this time to see what happens. I don't know what else to do besides that, or if I even need to.

Where is "out here". A really great oncologist might know very little about ITP.

Memphis. Also, the first day I was admitted my platelets were at 15 and they gave me a platelet transfusion, 40 mg of steroids, and BC pill to stop my bleeding. The 2nd day my platelets had dropped to 13. The 3rd day they went up to 20 and my bleeding was very light. 4th day they were at 90 and my bleeding had almost completely stopped. So I left with my platelets at 126 and taking 10 mg of prednisone, and a week later they had dropped to 110 so she decided I needed treatment. It didn't make much sense to me from the research I did on ITP. Maybe I should get a second opinion?

Yes, I would get another opinion. She's making my head spin around, I can't imagine what she's doing to yours. You're right, ITP is not an emergency unless there are bleeding symptoms and she's rushing everything.

1. Platelet transfusions don't work to bring counts up. Maybe they did that because of the bleeding, but it is not a treatment.
2. IVIG is so temporary that it's not worth doing unless you don't respond quickly to anything else.
3. Prednisone isn't pleasant, but she did not use the correct dose and gave up on it way too fast. Rituxan is much more toxic and you were rushed into that too. And no, I don't believe that your counts responded to that little bit and then dropped back down so fast. Rituxan doesn't work like that.
4. Splenectomy is a choice, not a must. It doesn't always work.
5. This does not have to be fixed now. As nice as that would be, subjecting you to one treatment after another in a short period of time is not the way to go.

It's great that you are getting informed! You will need to advocate for yourself.

If you decide to get a second opinion, make sure it is a hematologist who treats more than cancer. Look for interest in "benign hematology" or "blood disorders." I have gotten really good treatment from our University clinic.....having doctors that teach, mentor, go to conferences, and have "grand rounds" to discuss cases are (IMO) likely to be more aware of new treatments and theories of practice.

So my platelets came in at 75, so she dropped me to 5mg on the prednisone. But they were REALLY pushing IVIG. She said that it is because I need to get off prednisone ASAP because it has terrible side effects. She wants me to come in next week for treatment but I know my platelets will be lower since I'm taking less prednisone and I feel like a week is not enough time for my body to try to adjust on its own. BUT she keeps repeating "we REALLY need to get you off prednisone!" She's got me freaked out that if I wait an extra week my hip is going to give out or something. Ugh! I'm just so frustrated. Do I just listen to the lady with the degree who know a lot more than I do? Or (no offense) do I listen to people I don't know on the internet who claim to know about what I'm going through?

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Ccpete have look at this

Having IVIG doesn't get people off of Prednisone any faster, so I have no idea what she is talking about. IVIG lasts a few days to a week and then counts usually drop again. If you're down to 5 mg's, that's a pretty low dose and no cause for alarm. The scenario I see is that you get IVIG, stop Prednisone, counts spike for a week then you end up low again. What then?

You don't have to listen to internet people about exactly how to proceed.
But you've already had several people here tell you they wouldn't be trusting of a doctor using those methods. Count me in that group. You still have periods, so you're a lot younger than I am. If you had seen as many inept MDs in your life as I have, you'd know not to blindly trust the first one you see, especially if your gut instinct tells you not to. A doctor should not be a dictator; she should partner you in your own care.

I've been taking Prednisone for going on 3 years. It could definitely cause a lot of damage one day, but it hasn't yet. You don't have to hurry off it in order to move on to something that won't work longer than a few days.

Have you read the PDSA's treatment options on this site?

I agree with Janet. I've been on and off of high dose Prednisone since 1998 and on 15 mg's constantly since 2006 and it's just now causing problems (not for ITP). It is not a good long-term treatment for sure, but you haven't been on it that long. I've seen doctors make patients stay on it way longer than they should have and doctors who take patients off of it way too fast.

You don't have to trust our opinions, but the suggestion of a second opinion and following through with that will cause no harm. You also stated yourself that this doctor seems confused and is moving too fast, so there's that. There is no right or wrong way to treat ITP, but many of us have been here for a long time and have a lot of experience. You will learn too as you go along.

You don't have to listen to us - you have to listen to yourself. It is your body. You don't sound too confident with your hematologist so that's why it was suggested to get a 2nd opinion.

I'm not sure why your hematologist would be pushing IVIg with your count at 75k. My hematologist had told me she has never had a patient go into remission with IVIg - liked her a lot but our insurance changed and so did my hematologist. My present hematologist does not want my count to increase a lot at one time as that is not safe.

You have to do what you feel is right for you - whatever it is.

Good luck!