Help - treatment plan backup

Hi - Julia here. New to this ITP world. Finding it a bit scary. Overwhelming. My head feels like it is spinning. And I'm not going to lie - a little nauseous. Hoping people on here can help me maybe. I'm praying I will never need treatment and my levels stabilize. But I dont want to get caught with my pants down. I'd like to have a plan in place regarding treatments.

I know steroids are first in line for treatment. But don't usually lead to CR for most. The second and third line side effects make me start spinning. Any advice? There's so many scary side effects: rituximab can have fatal infusion reactions and multifocal leukoencephalitis; winrho can have risk of shock response; IViG can create blood closts and pulmonary edema. I want to cry and praying to God that I don't need any of them.

But what if I do? And I thought I read that one of the medications (maybe Nplate? or another TPO) can lead to leukemia later on. Is this true? Or am I confusing things. Can someone give me some advice?

Are there treatments that led to CR (complete remission) more often than others? My platelet levels have decreased over the past two years slowly. Starting normal then going to 150, 134, 121, 117, 111, 109, 115, 95, 80, 84. No symptoms. No bleeding events. No petechiae. Again, thanking God for that.

Sorry if I'm rambling. Any advice/help would be greatly appreciate. If you had to rank treatments from best to worst in terms of leading to long-term remission and least serious side effects, what order would you put them in? Thanks to all who answer. A lot of people on here so knowledgeable. I really need some help!

Hi Julia:
Right now, you are putting the cart before the horse....worrying before you have to. You may never have to worry about treating. But if you do, you are a step ahead because you've already started your homework on treatments. It's great to have an idea about where you'd want to start. The trick after that would be finding a doctor who agrees with your plan. Many have their own order of treatments and don't like to vary. There are some who do though.

ALL of the treatments have risks and possible side effects. Most people here would agree that the treatments are worse than ITP itself. However, serious or fatal side effects are very rare and long-term side effects depend on how long a person actually uses the drug. Some people treat sparingly when they have symptoms to keep counts in a safe range, and others agree to multiple treatments over a long period of time to try to achieve remission. There is no way to know what will cause remission or if it will ever occur. The goal for ITP used to be normal counts and remission, but it has changed over the years. For many, they are happy just being able to maintain safe counts over 30k. Remissions can be great, but they do not always last.

I have not heard of the TPO's causing leukemia, however, they can cause bone marrow fibrosis that has been reversible when stopping the drug. Blood clots can be another possible side effect. Most people find that after they go down the long treatment line, the TPO's give them better quality of life. The TPO's are often successful in giving a patient safe counts and usually have few to no side effects. Many people feel that they finally get their lives back once they are stable on these drugs.

You're right, steroids are often used first. I did get a three year remission from Prednisone once, so I wouldn't say it never happens. It's a horrible drug though and hard to tolerate.

It's hard to rank the treatments because we've all had different experiences and side effects. You would get a few lists that are not the same at all. Many people also base treatment decisions on what their insurance companies will pay; that also varies from patient to patient. Another thing is lifestyle; some people don't mind being hooked up to weekly or monthly IVIG infusions and others (like me) didn't want to bother with that due to missing work time.

Hello Julia
Have a look at this it may help. Don't be put off by the title it's quite easily readable for a none medical person.
On a personal note avoid steroids if at all possible.
Anne
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Thanks! Your responses helped. Really. Thank you. I printed the doc. Going to keep that around - as backup. In the document it says "Many ITP patients experience mild and stable disease requiring no treatment." Is this true? I don't see a lot of them on the board. .

Maybe people initially come on here when their condition is not stable looking for advice.
I'm a very experienced renal specialist nurse who was way out of her comfort zone being hospitalised with a haematological condition.
This site is an absolutely invaluable resource. There is nothing like learning form the experiences of others. I believe all patients should gain as much knowledge as they can about their conditions empowering them to make informed choices regarding treatment options rather than being railroaded by medics.