Ups and Downs after Rituxan?

So I had gotten up to the 130's but today went down 12 into the 120's.
I am sooooo NOT complaining - still in a very safe range and feeling great.

BUT - I want to make some travel plans for a few months from now and I am trying to predict the unpredictable!

So for those of you who tried Rituxan - did your counts bounce around for a bit after you hit your highest? I am four weeks out from the last infusion. Wondering if I might bounce back or if I am am going to be on the steady decline.

I know no one can tell me what will happen with me (darnit!) - but was wondering about the experiences of others.

My counts bounced around, and still are. I would take the trip, have fun.

mine have been bouncing all over too. I'm with Rodger....go on the trip, I believe you'll regret it if you don't!

Mine initially bouced starting in the 120k's, dropping to the mid-70k's during the first 2-3 months. Then it flat-lined in the high 80k's for about 5 months. It eventuall nosed dived to the mid 30k's at the end of the 9th month. As I mentioned in earlier posts, I had a re-treatment and there were absolutely no response to the Rituxan. This was a bummmer.

Michelle:

My counts did weird things too after Rituxan. I was in the 150's and suddenly dropped into the 60's. That lasted a few weeks, then they went back up and stayed there for a while. Went back down to the 60's, then went back up. You really can't say that going down means they will continue to do so.

Plan the trip. Do you have any treatments that work in a pinch? If so, you can always do that right before the trip if counts fall really low.

You guys are awesome and so supportive!

Sandi, I don't really have a treatment that works in a pinch. Well, the high dose prednisone has worked in the past but to be honest with you, I've been off steroids for about 9 weeks now and I am just now starting to feel like my normal self again. My knees are totally messed up now and I don't know that they will ever recover - I am not so sure I want to do steroids again unless I develop bleeding symptoms. I get bruises and the red marks in my mouth. I had thought those were bleeding symptoms before - but from reading on here, it doesn't seem like those are all too serious.

I feel this way now - but we'll see if I have the guts to watch and wait if I drop back to 10 again! :S

Nonetheless, this break of being off steroids and having a safe count - even though it's only been a few weeks - has been glorious. I feel like me again.

Someday I hope to feel like me whether I have 100,000 or 10,000 platelets.

Baby steps.

My first treatment took awhile to start working, numbers bounced around. Got about a 11/2 years. Had 2 platelet transfussions with not much luck. Got as low as 2k. Started round 2 of Rituxan last Oct. Hoping this was the "Golden" dose. Numbers have been great mid 200k. It is such a physical/emotional drain when the counts are low. Sometimes I wonder if working nights for 16 years has a role in it. Sure would be nice to know what causes this nasty little "Monster".
Take Care All.
Dean

oh my god Dean i worked nights for a few years too and I am convinced it caused my itp. Before i worked nights my counts were normal. nights are veryyy bad for you and i'll never work nights again no wayyyy . you're body is constantly changing clocks and it affects your hormones and immune system. we shoudl start a little survey here asking if anyone works nights here

I never did, but both my son and husband have. They've never had ITP.

I've worked nights many times....for many years even. It didn't cause my ITP. Sure, when I lived in Australia long ago and worked a swing shift...THAT affected my sleep, but it didn't come with ITP.
For many years I played music for a living....on the road 6-7 nights a week, eating at Waffle House and White Castle mostly, playing from 9:00pm 'til 2:00am. It gave me a warped view of all the folks who seem to live in nightclubs, but it didn't give me ITP. I did develop a strong dislike for Travolta disco-suits, the 'businessman's shuffle', and the song 'Freebird' but no ITP. After that I went to work in the company I have been with for 28 years now. I spent the first 6 years working nights. Again, no ITP.
Since 1989 I've worked as an engineer with daytime hours. And yet, I wasn't diagnosed with ITP until around 2003.
So no, I don't think working nights caused my ITP. Not at all.

Looking at my own history, I apply Occam's Razor: 'the simplest explanation is usually the correct one' (paraphrased).

So what is "MY" simplest explanation? **Heredity**
All of my siblings, both my parents, and all four of my grandparents have/had various immune system disorders and/or cancer. Most of my other relatives did as well. Heck, my twin sister Jill has a different platelet disorder. But she has never worked nights...
It's simple heredity....nothing more. The luck of the draw.

Why is it so difficult to accept that one may just have "bad genes"?
It's no big deal, that's just life.
.

Good post, Jack!