Still holding steady

My platelets went from 330,000 to 345,000. I am really thinking that 407,000 was a fluke. So now I am on 5mg a day. I am feeling that urgency of someone who is at the end of a long journey and just wants to get home. My friends tell me not to go to the Christmas markets in November and December, that I should wait til I stabilize. I told them there will never be a time I can be confident that there won't be issues, so I am going while I can. I would really like to know definitively, however, if I can fly home with zero platelets. The idea of sitting in Germany for weeks is not one I cherish, especially when I would miss christmas with my family. I don't see why if you can live with ITP in Denver, you shouldn't be able to handle the same pressure in an airplane. It would be a ten hour flight.

Your counts are really stable. You should quit worrying and go!

Roberta,

Those numbers are great! Go have fun! How are things in Indy?

Jeffrey

RHofm50129 wrote: My friends tell me not to go to the Christmas markets in November and December, that I should wait til I stabilize.

I really think you are quite stable at the moment. I don't remember the last time I saw someone do as well as you have so quickly. It's been years. You got through the cruise quite well after all that worrying. Christmas is four and a half months away....

RHofm50129 wrote: that I should wait til I stabilize.

I'd like to know what you consider "stabilize"?!

I think they think that once I am off steroids, my body will settle in and everything will return to normal. One of their husbands had an attack of ITP about 35 years ago, following a flu shot, and has never had it again. I think she thinks that is the way it goes for most people. They just don't understand that people come out of remission all the time and there's no predicting.

I am going to go to the Christmas markets as long as my counts are still good. I already contacted a hematologist in Munich who does CBCs and gives the results immediately, so that I can check my count if I want to.

Thanks for the heads up, Sandi. I have no feel for how most people do with this initially. Obviously, I know some people have a really terrible time with this, but as to the rest of the people, I have no feel for how I am doing compared to them. Yes, I have turned out to be very stable. Since May 8th, I've been in the 300's. I still hold my breath every time the steroid mg chunks down. I understand that quite a few people relapse when they are totally off the steroids.

Roberts

I do understand your worry, being a great worrier myself. I have tracked my counts over the years since 2005 and I can give you an idea how you compare to me. I respond well to steroids.


2/24/2006: 17k
40 mg pred
3/3/06: 300k
Tapered from 30 to 10mg
3/16/06
150k
4/16/06
10mg
50k
5mg pred
4/25/06
17k


6/1/2011
20k
30mg pred
6/7/2011
302k
20 mg pred
6/14/2011
106k
10mg
6/21
70k
5mg
7/26/2011
18k

So see how even tho I respond well I drop off during the taper. Your counts have been stable all along.

But it looks like you're all over the board and some of your counts are really low. Is that considered responding well? I guess I just don't understand what responding well means if that is the case. I have to reassess my feelings about this. You know, they won't say a word about what is normal because there is no normal. I feel pretty good then! Still worried the house will fall in though.

Were you in remission during those middle years you haven't listed? What did you run during remission?

Roberta:

I think most people consider a good response to be a count that responds to steroids which results in the person achieving a normal level. That doesn't happen for everyone. It's almost expected that counts will start to drop during a taper because that happens more often than not. I didn't believe that in the past; I used to think that most people tended to stay up when completing Prednisone, but after watching patients responses for many years, I see that most experience a drop. We would say that a person does not have a good response if they cannot get counts in a safe range after weeks of steroids.

My first time on Prednisone, my counts shot up quickly and slowly dropped as I tapered, but stayed in a safe level for a few months. About four months after I stopped Prednisone, I had to go back on it. The second time did result in a few treatment free years. I stopped getting counts after a year and a half so when I did finally get a count a year and a half after that, I was surprised to find my counts in the low 30's. I monitored for a few weeks and when I got to 10k, took a breath and began treatment again.

The few people I have seen who sustained high counts throughout the taper, seemed to be able to maintain a long remission. Those people have not come back to the Forum so I don't know if that means they were acute or that they just didn't bother coming back when remission ended.

No one can predict what will happen for you, but all signs indicate that you are in a group in which remission is a good possibility. Anything could change that of course, but there is no point in worrying and stressing over something that may never happen. Cross that bridge if and when you come to it. You can't change the situation, but you can change the way you choose to handle it.

Nothing in life is certain. Bad things happen to good people all the time, many things worse than ITP, so flipping the coin to find the positive is beneficial. The positive for you right now is that you are doing extremely well, probably better than the majority of the people here.

Hi Roberta,
I am considered to respond well to steroids because my counts will consistently go up over 300k on 30mg of prednisone. Then they gradually go down with the taper. I was in remission following rituxan treatment in 2006 and then in 2011. I had counts checked periodically during remission and here are some of them:
11/17/06 210 k
12/8/06 260k
1/19/07 203k
6/22/07. 379k
9/28/07. 298k

5/8/08. 334k
9/9/08. 419k
9/2009. 290k

So, they do jump around in remission, I never worried about those variations.

Sandi

I like your saying "you can't change the situation but you can change the way you choose to handle it ". If I had the patience I would embroider that on a pillow.

Dru,
Instead of embroidering it, write it on a pillow case in magic marker - that would be changing the way you handle it!
Erica

Yes going to find a good color marker and will do it now.....thanks for the idea Erica!

I hope I am like my neighbor who had ITP something like 30 years ago when he was a resident at a hospital and never had it again. Because 30 years from now I would be 96, and most people don't make 96. The fact that my doctor had ITP twice, 17 years apart and in response (the second time) to a virus his son carried, that it must be just a virus with a certain structure that would flip that person over. You can't tell me he didn't come into contact with possibly hundreds of viruses over the 17 years and they did not cause him problems. He did not go into the hospital that second time. Makes me wonder if he would put his patients in automatically.

Right now, I am just eager to be off steroids. Three more weeks if all goes well. Three weeks.
Thank you for your input, all of you.

Roberta, I was in remission from October 2006 through Feb 2011. I had a count done 9/2009 and not another one until 9/2010: 290k and then not another one at the hema until jan 2011 and they were lower at 67k.

My remissions were from rituxan... I never maintained a stable count with prednisone.