Nplate to Promacta- any experiences?

Well argh. I started on Nplate in 4/09, took awhile to get the dose working but then it did work well for a time, then the numbers started wacking out and crashing, and we were struggling with getting the dose right so a month ago we decided to see how I do on Promacta. I'm going to China for a month, leaving in late Sept., and we were hoping to have me on a nice simple pill before that- but it doesn't seem to be doing anything. Here are my counts and notes for the last little bit-

5/13/10- 262 count- 180 dose Nplate
5/19/10- 10 count- 180 dose WTF? Leaving for Colo. Tomorrow- this dose had been working
5/28/10- 3 count- 180 dose Home from Colo- again, WTF?
6/4/10- 181 count- 180 dose Pettichia daily until 6/3
6/11/10- 5 count- 200 dose some BPV (benign positional vertigo) today
6/15/10- 3 count- In ER with gut issues again
6/18/10- 31 count- 250 dose
6/24/10- 19 count- 250 dose
7/1/10- 109 count- 250 dose
7/8/10- 116 count- 250 dose
7/15/10- 36 count- 250 dose
7/22/10- 120 count- 250 dose Starting on PROMACTA tomorrow- 50mg.
7/29/10- 250 count- 50mg. dose
8/5/10- 107 count- 50mg.
8/9/10- 7 count- 50mg. Upping the dose to 75mg. tonight
8/12/10- 9 count- 75mg.
8/19/10- 4 count- 75mg.

So crap- doc says 75mg. is the max (I'm her only patient on it) so we're giving it another week, tops, and they I'll go back on Nplate hoping we still have time to get my count up before heading to China. We'll start in Beijing but most of the trip is in Tibet and I REALLY want platelets for that. Does anyone have any experience with switching from Nplate to Promacta? I'd especially like to hear a success story- something along the lines of "It took four weeks but then all at once BAM! Success!" Anybody got one of those for me? Or anything else? I guess I'd settle for the truth if I had to.

Other than that all's well, my life is really good and we're so excited about the trip we're ready to bust!

Hey, Lib, great to see you posting!

Can't help you with your questions as I'm just getting ready to get Rituxan next month. I'm surprised no body has answered you yet. I'm sure Sandi will.

I hope you have a great time in China.

Well, I don't have any experience with those, but I'm happy to see you posting again!

Hey Sandi- yep, sorry to be so absent but I guess I've just been so busy being in love that it's taking up all my time- no apologies here! I'm not really surprised I'm not getting replies, both meds are so new that I'm sure very few people have made the switch from one to the other. It's hell bein' special I tell ya. I'll keep y'all posted on what works or doesn't.

Don't lose hope yet. There have been a few who did the switch.

I'm so happy for you - enjoy being in love and be happy!

Hi Lib,
I miss hearing about your life! You just drop casually that you're going to China for a month! WTHeck? Sorry never did either drug.
Erica

Hi Lib,
I miss hearing about your life! You just drop casually that you're going to China for a month! WTHeck? Sorry never did either drug.
Erica

Oh yeah- one of the MANY things that makes me so lucky is that Jim shares my love of travel! He sold a couple of rental properties recently and we decided that since he's on disability for at least 2 years, we'll treat it like retirement and take a big trip or three. We leave Sept. 23 for China for a month- fly into Beijing and stay 3 days, then 2 days in Xi'an, 6 days in Yunnan (we're going to Shangri La!!), 6 days in Tibet, a 3 day cruise on the Yangtze, and then 5 days in Shanghai with some travel days in between some of this. We'll be in Shanghai for the World Expo- and I have a cousin who lives there so we'll stay with her for that and have a few days to brush up on our English again before we head home.

It's an amazing tour, we're using WildChina.com and it's essentially a private tour, Jim and I and the guide. We'll stay in private homes when we're in the country, we'll camp on the Tibet plains for a night, visit a Tibetan hospital and meet with a doctor there to learn about traditional Tibetan medicine, have a private Tai Chi lesson and a caligraphy lesson, I could go on and on!! It's the trip of a lifetime- once we decided to go to China at all (this started out as "Let's go see my cousin") we figured it would probably be the only time we ever go there, so we, um... went a little nuts I guess you could say. Whooo hoooo!!!

When we get home we'll chill for a bit, but then we're going to spend a week at Mardi Gras in Feb., and THEN we'll probably stay home for a year... unless we hit the lottery, duh! Big fun!

Have a GREAT time!

Hi there stranger, It was so good to see your name on the posts then reading your trip, well im green! Trev is on Nplate but hasnt done the switch, Chot injects him every week with the stuff. Is that an option for Jim to do to you? Did you try the Imuran?
Your trip sounds amazing! I've always wanted to go to Tibet, it'l be an experience and a half!!
Are you still doing your glass art?
It's so good to hear your still loving the loving,
Have fun you lucky duck!
Julia

Julia, you hear from Chot? How are Trev's counts? Has he had the hip surgery? I've been wondering about them for a long time.
Erica

Hey Julia- actually, if I wind up back on Nplate Amgen will send a doctor to me in China, no matter where I am, once a week to give me the shot. That blew me away- doc had offered to have her folks teach me to mix it myself and take the powder with me but it's not approved in China yet and I'd just as soon not do anything that might look like smuggling to them, so Amgen's offer is really going to help.

I'm going to get a count tomorrow, if it's still poopy I'll probably switch back to the Nplate on Tuesday. I'll keep y'all posted.

I didn't switch from Nplate to Promacta.
However, I do take Promacta and it took a few weeks to raise my platelet count with it. I started on 50mg/day. That dosage only raised my count to around 13k, so my doc bumped the dosage the 75mg max.
It took another 4 weeks for me to get from 13k to 32k. Things have stabilized over the past 6 months to around 40k-50k with the 75mg dosage.
I see other people soared to over 300k after a few weeks. I did not.
Hopefully, you'll be in the 'soared to over 300k' group.
I must say that Promacta is easier to live on than past treatments I've used. And since I am used to living with a count between 20k and 50k anyway, I'm fine with it.
.

Hi Erica, Trev is going in for surgery on the 26th, will keep you posted when i hear anything. I can only imagine the stomach nerves they are going through!

Wow Lib you are "special"! If the pill doesn't do anything i'd def go for ordering a doctor wherever you are, you dont want to spend any time locked up smuggling dodgy drugs over there! That must be a very good insurance company! Good luck for tomorrow's count.

Julia

Weirdjack- I like the moniker! Looks like I'm my own "well, it took a month" story now too- I got my platelets checked today and they were 42!!!! I'm THRILLED with that count- most of my life has been spent with numbers under 5, so 42 is Rockin' and Rollin' in my world. Nplate took me higher but if I can stay above 30 by taking a daily pill instead of a weekly shot, I'm all over that. Color me "happy gal"!

YEY!! You must be grinning from ear to ear! Get ya cases packed ur going on ya jollies with a pill a day to keep the doctor away! Good on ya
Julia

I just started Promacta. 50mg. So far no problems. I will have my platelets checked Friday. Will let you know the results.

Good luck in China.