Prednisone vs high dose dex pulse

Hi all,
Still new to ITP. I am on the high dose dex protocol (40 mg daily for 4 days, every 2 weeks). Obviously too early to say how well it will work, but counts back down to starting point after each pulse. My doctor mentioned trying prednisone as next step if dex doesn't work. I really really do not want to go on pred long term. I lost over 70 lbs a couple yeArs ago, and struggle with anxiety/depression. I can handle 4 days at a time, but long term steroids really worry me. It seems to me that if one steroid didn't work, another is unlikely to? Any real world experience out there?
Based on some of the recent studies I've read, it seems that high dose dex along with rituxan is a more effective approach than either one itself, especially for newly diagnosed cases? My doctors comment was that we should try pred instead of the 'chemo' options because once you start those, you have to keep at them. Didn't get into specifics. But I'm trying to become more educated for my next appointment with her. I would imagine the rituxan is quite expensive, and not often a first line treatment? Wondering if this would be the next rational choice if I decline pred (if further treatment is even warranted).
I am trying to take it one step at a time, but am having a hard time not looking ahead. I'm ok monitoring my counts (lowest was 30), but my doctor does not seem so comfortable with that as I have a very physical job. I don't deal well with uncertainty and from all the reading I've done here, it seems that I'll need to figure out how to deal with ups and downs!
Thanks for any advice!

Over here in the UK treatment isn't started until counts go below 30. My advice is avoid Prednisolone if at all possible. Horrid drug with dreadful side effects, whist on it and whilst trying to taper dose.

Hi. Rituxan is not chemo...it is a biologic drug like Humira and Orencia. There is no truth to the comment that once you start that you have to stay with it. You can move on to any other treatment after Rituxan. Most people do if Rituxan is not successful. If it is, they stick with it only if they choose to do so.

I would suggest a second opinion. This doctor seems out of touch with how to treat ITP. Personally, I would not go the Prednisone route next. It will probably just be a waste of time.

Thank you both. I definitely do not want to go on pred, and I'm glad to know I'm not off base there. I also didn't understand why she seemed to imply that all other options are 'chemo'. Perhaps I just haven't had enough time to discuss things in depth. Both meetings with her seemed rushed, as she squeezed me in between other previously scheduled appointments. She does make it seem like my counts are quite worrisome, when that doesn't necessarily seem to be the case, physical job or not. I currently only have excessive bruising and some petechiae. Symptoms were much worse months ago (and I failed to put the pieces together and didn't get checked out), so I believe she is concerned that I was much lower back then, before the diagnosis was officially made. But it seems to me that time will tell....if counts drop to a truly concerning level, I can make informed decisions on next step (other than pred) at that time.

I am in the northeastern U.S....do you have any suggestions or resources I can investigate to find someone well versed in ITP my area? I'm also having insurance issues so I'd like to have someone in my network lined up and ready to go if needed.
Thank you again for your help!

Sierra

I can't help you with US treatments regimes and costs but you may be interested in the link below.

You do not need to be a nurse to understand it.

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

Where in the northeastern US? I'm in PA.

I'm in MA, just south of Boston

Mrsb04, that was an excellent link, very concise and well written. Thank you!

www.dana-farber.org/Adult-Care/Treatment-and-Support/Treatment-Centers-and-Clinical-Services/HematologyTreatment-Center.aspx

Thank you Sandi. I am currently with Dana Farber, but at a satellite center south of Boston. Seems like it is the right program to be a part of, with lots of options for physicians with an interest in platelet disorders and ITP in the Boston center. I will see how things progress with my current doctor and treatment plan, and go from there.
Thank you so much again for your help. This board is a godsend and so incredibly helpful and supportive.

Good luck and keep us updated.