Steroids and remission

I am officially in remission the Dr says. I have come up to 169000 in just 2 weeks from 3k. I have been tapering by 20mg from 100mg a week and still counts are coming up around 10000 everyday! Have to taper some more this week and go back next week to see where they are. I am happy that they are still rising even on taper because I know with many that does not happen.

I love this forum and it is so informative and continues to help me understand!!!

Please share your story with me here about your treatments etc I would love the knowledge!

SHannon
1-26-11 3k on 100mg prednisone
2-4-11 121000 put on 80mg
today 2-9-11 169000k on 80mg prednisone to taper to 60mg this week

Hi Shannon,

The great news is that you respond to steroids, and so you'll have that option if your platelets don't hold. The not-so-good news is that it's too early for your doctor to have used the word remission. That doesn't mean you shouldn't stay positive. Keep us informed--and I hope your platelets do stay up!

I agree with Tamar - odd choice of words there. Remission does not mean normal platelets, it means maintaining a normal count without the use of medications for a certain period of time.

Congrats on the counts though!

my consultant(s) have never used the term remission at any time. I had a 5 year break of any known platelet drops but remission is an odd word for ITP. Especially when still on prednisolone. You will know for sure once you have completely stopped taking them and your body holds its own so to speak.
But well done for reaching the stage of tapering and hope you have a smooth tapering experience.

Remission is a very common term used for ITP.

"Remissions. 75 patients (71.4%) attained a stable partial (platelet count >30,000/mm3) or complete (normal platelet count) remission; 51 patients maintained their remission after stopping therapy while 24 patients required continued treatment. The median time to remission following splenectomy failure was 46 months (range: 1-437 months). The median remission durations were: Off therapy- 60 months (range 10-212) and On therapy- 48 months (range 2-167). Treatment Failure. 30 patients (29.6%) remained unresponsive to treatment. Mortality. 32 patients died, 17 (15.7%) due to ITP (bleeding-11 patients, therapy complications- 6 patients) and 15 patients (13.9%) of unrelated causes. We conclude that most refractory ITP patients attain a stable remission although, on average, this occurs slowly. However, a subpopulation with severe, resistant disease has significant morbidity and mortality."

bloodjournal.hematologylibrary.org/cgi/content/short/2003-11-3908v1

Okay Sandi, on here and on it the English written material it is a common word. But having been diagnosed with ITP for 16 years and once off prednislone my platelets are normal. Consultants have not used that term with me. so for me, it is an odd word to use. This is where I worry about it all being missrepresented for what it is. What the docs tell us and what we talk about when together as such and things we pick up along the way.
In my own experience of 16 years worth of ITP remission is a word not used to me;)

ps off which I am very greatful for because when I answer the holiday insurance questions I can truthfully say that words like remission haven't been used, because they simply haven't. If they had the insurance would go up. So whilst we are busy using them on here, certainly the English person would need to be a bit more thoughtful especially if their consultant hasn't ever used the terms.. we can get carried away. As part of the screening questions they ask if that term has ever been used. So I can honestly say no because my consultant(s) have never used it.

But I do worry about people who do start saying such words because they are commonly written into material and I just wonder if things are sometimes not glorified but forget what it really is.

Hi Shannon!

I have had ITP since I was 3 yrs old. I have had 5 ITP episodes, all treated with prednisone except one episode where I received IV steroids and a platelet transfusion (they don't do that treatment anymore now but it did kick my ITP's butt back then and I achieved normal platelet counts with only 3 days of treatment).

I usually stay on steroids for 3-4 months, then my platelets stabilize and I can get off steroids and the platelets stay normal.

My ITP trigger so far is stomach flu so whenever I get stomach flu, my ITP becomes active.

Currently I am having one of my episodes and I started with Dexamethasone pulse last Dec 17, followed by 80 mg of prednisone after the pulse. I am now on 40 mg of prednisone and my platelets last Tue were 352k Hope they stay that way as I continue to taper. If all goes well, my hemo will taper me 20 mg every 2 weeks or 10 mg every week, depending on how I feel. I like a slow taper because it gives me less side effects.

Pawee

Wonder how many times a person has to be acute before it's considered chronic?

I wonder - would someone be less "anxious" with the classification of acute vs chronic? Personally my mental state would likely be similar. It took me several years of sustained counts before I stopped thinking about it every day, but the thought was never far away. But then again, I never heard either word - it was just ITP and I wasn't responding. That said, I would prefer acute anytime.

Hmmm - sunshine must be bringing out my philosophical side. :whistle:

Pawee what would happen if you didn't treat with an "episode"? Would your count eventually rise on it's own once the stomach flu has run its course?

Yeah, chronic is just a label. I was never actually given the diagnosis of chronic, I just made that assumption on my own when I was still battling it on and off after a few years.