Itp is worse than it has been ever

So I was diagnosed in 2013 and the steroids worked for me for a while. Then it 2015 stuff started to go bad for me. Ended up with rituxan, a splenectomy,tried promacta and now nplate. Have been in the hospital with counts of 1000 several times. I have had several rounds of platelets this year and and have been in the hospital since Tuesday. I have had platelets ivig and steroids this visit and my high number was a whopping 5000 when i arrived. Since the platelets i have dropped to 1000. I am tired of this.

Gees, bran, I am fairly new to this but I can hear you. I think at this point and even before this point you are entitled to be tired. So sorry for your misery.
What's next or do you know yet? Have you let your doctor know you are "tired of this"?
I am tired too. I have only done three rounds of high dose pred and looking at Rituxan but I have battled auto-immune illness for twenty-six years with one diagnosis after the other. I get the "I am tired of this". Sick is sick is sick.
Especially with ITP, it's a mystery. Keep in touch with everyone and let everyone know how you are doing. Sandy Too

Bran, If the Nplate doesn't work well enough, you still have options.

Cytoxan (cyclophosphamide) is a cancer drug that depletes T-cells, a type of white blood cells.

Dapsone is an antibiotic that also has antiinflammatory properties, and decreases platelet destruction for some people. Works for some, but not all people, but it often works when the others don't. It can take a long time to work.

Danazol is a synthetic steroid that also decreases platelet destruction. It is mainly used for endometriosis in women, but it can have masculinizing side effects, such as increased hair growth.

Combination therapies ideally combine a drug to increase platelet production with a drug to decrease destruction. Example: Nplate plus Cytoxan. The hope is that by combining the drugs you lessen the required dosage of each drug, decreasing the degree of side effects.

You are already immune-compromised from being asplenic, so you do want to minimize exposure to drugs that would further compromise your immune system.

I hate to be broken record on this, but doctors seem to dismiss h-Pylori bacteria as a potentially long term complication of ITP. If you required higher doses of steroids in 2013/2014 that could point to h-Pylori - from what I've seen.

What happens with N-Plate? Have you tried Promacta?

Tried promacta but it didn't absorb well. I would get to a good count the shoot up over 500000 then plummet to under 10000. The same is happening on nplate but to a lessor degree. Today i had a reaction to platelets so they had to get a new batch.

My understanding is that platelets should not be used except when there is active bleeding that cannot be stopped. The ITP body reacts to more platelets by just stimulating more antibodies that result in more destruction, and soon you are back where you started, or even lower.

Similarly, it seems to me that what happened with the Promacta is that the initial doses got a head start on the antibodies, but then the antibodies overreacted to the high platelets, causing platelets to plummet. Perhaps your doctor did not give the Promacta a decent chance to stabilize.

The fact that the Promacta caused a strong initial response indicates to me that a combination therapy has a good possibility to work for you, if neither Promacta nor Nplate alone will stabilize at a decent dosage. As a second drug, Dapsone or Danazol have the advantage of not being immune-suppressive.

The more often you get platelet transfusions, the greater the risk of allergic reactions (alloimmunity). Transfusions can also cause Post Transfusion Purpura which can cause counts to drop. How often do you get those and do you have active bleeding?

It seems as though you were responding to N-Plate and Promacta....how long did you try them? Did the Dr. keep changing the doses to reflect the current count?

I have had platelets about 10 times this yeat. Each time i had low counts and bleeding. The dr has kept track. We tried the promacta for several months but i had a gastric bypass so my absorption was not as good as with the nplate. I only started nplate in October so we are still working on that. Problem this time (i think) was she got new partners and went from a smaller practice to a large one so i got passed over by a nurse who doesn't know my history so she didn't listen to me like the nurse who normally takes care of my file.

I will discuss that with her. Thanks for the info.

I was tested in 2015 (for an unrelated issue) and was clear.

I think I'd look into N-Plate and trying to get stable on it. It can take a while to get the dose right and dropping right before the next injection is common.

10 transfusions isn't too bad.

First of all- completely agree- it's incredibly frustrating and seems to have no rhyme or reason.
Secondly- what helped me is that my dr let me go about my business with platelets 3 for almost 3
Months. I had oetechia and bruises and mouth blisters but no major bleeding- so being in the hospital wasn't doing me any good. I just got a medic alert bracelet, went back to work and tried my best to live as close to normal as possible. If you aren't having serious bleeding events I would speak to your drs about accepting this as a (hopefully) temporary normal and get back to your business. I got much less depressed when I started working again.....now my platelets are all over the place on nplate but the only thing that would ever get me to a hospital would be active bleeding

Good luck!
Deb