length of steroid use? Promacta? Stress and itp?

I've been on this high dose of prednisone for over 4 months. Reading others stories it seemed like this was a unusually long amount of time. Did my doctor mess up by not begining another treatment sooner. Really feeling the side effects of prednisone. How long were others steroid treatments?

I was on 60mg prednisone and then down to 40. Now 20. I've taken two doses of dexamethasone. I've had the IVIG. I just started promacta

When I first was diagnosed it was after a very stressful time, i also gave up a great stress releiever during that time (marijuana). I was sent to the emergency room because I had a platlet count of 1000, lowest the doctors had ever seen.

What is your experience with promacta? Has it helped? Has it caused you side effexrs.

My other question was how do you think stress effects itp?

Welcome to the forum. If your doctor has never seen a low count like that before, I'd wonder whether they are very experienced with treating ITP. For that reason if it were me I'd be wanting a second opinion from someone more experienced.

It is highly unusual to be on high doses of prednisone and then take dex at the same time. Or was that before the pred? Also, it is best to try one sort of treatment at a time so that you know what works and what doesn't. What is your count now? If the steroid is not working after 4 months then you need to taper off it.

As for stress, some think it causes their counts to drop and some don't. It may be coincidence or not, you will likely never know.

Hi. Counts as low as 1k are common with ITP. Many ITP patients are on Prednisone for months...the average is 3 to 6 months. It can take that long to taper off of it. Prednisone is usually the first treatment used and people normally do not move on to other treatments umtil after that has failed.

IVIG is almost always temporary and is not known to cause remission. What are your counts now?

With ITP, it is better to focus on maintaining safe counts (above 30k) than it is to try to achieve normal counts. Normal counts are not needed for daily life unless you are very adventurous.

Promacta is a very good treatment to be using. It has a very high success rate for raising counts and can sometimes cause remissions in time. Counts should be maintained around 50k on that drug and should be dosed accordingly. Hopefully you can be stabilized soon.

Sandi-- a typo? I think Sandi meant to say that people usually DO move on to other treatments after prednisone, and are often very happy to get onto something else.

My first hemo kept me on high doses of prednisone for too long in my opinion. I think he really wanted it to put me in remission but it didn't. Counts always went down as I tapered. I changed doctors and moved on to another treatment. Reminder: you must taper prednisone, esp when you get down to 10mg. Its important to give your adrenals time to start working on their own.

Promacta actually had a slight calming affect on me and curbed my appetite- I was also on prednisone. Promacta sort of countered the affects of prednisone so that was a good side effect. The side effects were very mild and kept my counts around 50K. I tried Nplate next which has worked well and also has had very few side effects.

I used to think stress caused my ITP but over 6yrs I've had a lot of stress and counts stayed stable during those times. Counts have dropped when I've had viruses and vaccines. My immune system goes absolutely haywire when I have a vaccine. So now I'm thinking those things probably triggered my ITP.

You'll find lots of great information here on the forum. keep reading and good luck!

Yup - you're right Posey! I forgot the "until". I changed it.

Promacta has given me too many side effects.

Extreme anxiety(i'm also on 30mg prednisone which by itself makes me feel great), brain fog, weakness, fatigue, ED, loss of libido and just generally feeling not well or happy.

So the doctor prescribed xanax and celexa and i tried the xanax once, pleasant sleepy feeling for awhile and than lots of joint pain, passed out hard so wasn't a real winner in my book. I'm not going to take the celexa for something clearly caused by the promacta.

So i just decided today to stop taking it (its a saturday) i had ivig recently and my counts are at 450k, i already know i want to try other treaments like rituxan, and i have hope for a remission still and am not ready to committ to a drug that ruins my quality of life. So i'm hoping the abrubt cessation does not harm me. I consideres tapering it and only taking 25 today. But i just want it out of my system.

I answered you in a different post that is in the Treatments Section.