Next Step?

So after a little over a month on Promacta my count is a very unspectacular 62 today. I peaked at 132 3.5 weeks ago. My hemp wants me to consider removing my spleen. I am struggling with this decision. If I choose the surgery it needs to be this year so I have some time.
Prednisone had no effect.
Rituxin very mild to no effect.
25mg Promacta so far is keeping me safe but is cost prohibited long term.
IVIG works as emergency boost but very short term.

Your count is perfect at 62! I'd say that is spectacular. It's not supposed to be any higher. Is your Hemo not happy with this?

If it is costing you too much, that would be a valid reason to think about other options but otherwise, it seems to be doing a good job.

Sandi is right. In terms of the average ITP'er, 62 with 25 mg is quite good. Sorry, I may have driven your expectations a little too high.

Lets take a look at some others with strong IVIG response, poor steroid response - a response we both have. Take a look at 'Bunnie'. Her reported count is 87 with 25mg Promacta. Another example is 'dmblank'. She started out in the 90's with 25mg but had to move up to 50mg after a year. So your not far off those two at all.

Realize that the reason why your doc wants to go with splenectomy is because of your strong IVIG response. As I have read in studies, IVIG response is an indicator of successful splenectomy because it indicates that destruction is occurring in the spleen and not the liver. That's why they wanted 'momto3boys' spleen out when she was a kid. She had a strong IVIG response. As far as I know, the type of ITP one has does not in any way predict long term success of splenectomy. I freely admit, story data on PDSA forum is really shallow in that area.

Obviously, the safest and least risky path going forward is to continue Promacta. Lets take a look at some crazy ideas with that and lowering expenses.
- Change insurance plans so that total yearly expenses are minimized. Hope that science will change the ITP remission landscape soon and the Promacta expense will only be needed for a few years.
- Talk to your Hema about changing your dosing to minimize cost. Since we seem to have TPO antibodies, skipping day(s) on Promacta seems to be ok (no count crashing). Take 50mg dose every other day
- Take 75mg dose every third day
- Leverage the fact that 62 is above 50. Take 75mg every fourth or fifth day
- Switch to NPlate and do what 'jayinchicago' does. Even though you only need a '1' dose level, take a '3' dose every 3 weeks to cut costs by one third

Then there is Danazol, which has higher risk and greater reward. I won't dwell on that one - I'd just be repeating myself.

Ok, guess that's my two cents. Hope this helps...

The doctor was happy with the 62 count, I was just hoping for more. I have pretty good insurance but the medical and prescription coverage are separate. On the medical side you can pick a plan with a lower deductible but the "out of pocket maximum" does not change. I hit the max in October when I was diagnosed and again in February. I cannot do that every year. The drug side is only 1 option. Right now they are paying 100% of the Promacta but the website says it is a special reimbursement program. That could change on January 1.

For now I am going to keep using the Promacta since it is working. I just have to decide if I try surgery to get off everything or if I stick with the Promacta till it stops working.

Counts should be around 50k with Promacta because of the clotting risk. I wouldn't assume that Promacta will stop working....it could actually end up causing remission. One can only hope. The point you are at right now is a goal for many people who are trying to get there. I consider this a successful treatment for you for the time being (not that my opinion matters).

If you go for the splenectomy and it fails, you might end up back on Promacta again with an even higher clotting risk. Try to look at the bigger picture and not just what is going on right now. Nothing for ITP is a quick fix.

Sandi wrote: If you go for the splenectomy and it fails, you might end up back on Promacta again with an even higher clotting risk. Try to look at the bigger picture and not just what is going on right now. Nothing for ITP is a quick fix.

^^^^^^ This is me Failed splenectomy and on Promacta with a higher clotting risk. Boy would I love to have a count of 62 while only taking 25mg Promacta! You are doing great (count-wise) with the medication. Insurance and financial considerations are something else, however. It sounds like things are covered for the moment, so why not continue as long as you can since it is working? Maybe your count trends will show a gradual upward creep and you may even be able to decrease from the 25mg you are on now. No one can predict the future, but having a treatment that is working in the "now" is a good thing. And splenectomies aren't all sunshine and roses (yes, I'm biased since mine didn't work, :lol:)

I think my plan for now is stick with what's working. (Promacta) I will see how my count does as the year progresses. My plan is if I do the surgery route it would be November/December time frame.
It was good not having any real symptoms for a whole month.

Promacta can also put some people into remission but has a lower chance like 25% and it takes time.

I was on 50mg promacta for 2 months and did not do anything to me.

Have you tried nplate?

I have not tried Nplate. Really only because of convenience factor, the Promacta is easier to deal with.

You're doing great on Promacta so far. No need to think about changing....it's only been a month. It can take months or years to achieve remission no matter which path you take. The goal is to take the safest route with the least side effects.

It took me eight years to get a long-term remission. All I had to work with was Prednisone and Rituxan. I would not consider splenectomy and the way things turned out, it's a good thing that I didn't.