Mac?

Emily your input is interesting and valuable to the conversation- thanks and keep posting!

I took Promacta in the middle of the night 3am also. It seemed easier because I was eating dairy products for breakfast and I was already taking a thyroid hormone 1 hour before eating.

For me the side effects of Nplate did go away over time. First night after the first injection I had bad insomnia, couldn't sleep a wink. Then felt just awful at work, light-headed, body aches. I thought I couldn't continue taking it. But it was better with the second dose, better with each dose until nearly no side effects.

I believe it was said Dr Provan prefers Promacta because Nplate tends to make counts swing wildly. Well, for me I prefer Nplate because I have fewer side effects- I feel overall better on Nplate. and my counts have been rock steady for the year I've been taking it- in the 40K-50s. So again, hard to say which is best, everyone's experience is quite unique! hah

and why weirdjack .. if you think Emily's information is wrong, did you decide to take it in the middle of the night ?

Remember, it is not about what I "THINK", it is about what the manufacturer states.
I quoted what GSK states, not what I or anyone else "thinks". My apologies for doing so.

Regarding the question you asked;
I took Promacta in the middle of the night because it was convenient for me to do so. When I first started on Promacta, I had a bit of GERD. Adjusting when I took the dosage resolved that. My point originally being that Promacta is not "difficult".

As GSK's instructions state the '4 hours before and after' specification is only for certain things...mostly containing calcium which (IIRC) can interfere with Promacta's absorption.
Read it, I didn't make that up, I didn't guess at it. For normal foods and drink it is "1 hour before and 2 hours after"...that is pretty standard for many drugs.
Don't take my word for this....Go to the GSK website and read it for yourself;
[url] www.promacta.com/citp/about/index.html?google=p_&rotation=71700000007289707&banner=58700000302983427&kw=4963603806&cc=us:p1114c00048:e1:w1:p20&pid=3171603 [/url]

While everyone is different, GSK's instructions are not.

I will shut up now and bow out.

I've been around enough decades to know exactly how often doctors get things wrong.
Truly accurate information is more likely to be gotten from the manufacturer.
Thanks, wj.

I should have responded by saying what the manufacturer says and then said what the doctor said. Enough said. We are here to help each other not scold each other. Let's go back to that!

Today was the big day. New appt with a new Dr. SHe confirmed what we all knew that my sister was very allergic to rituxan and all the side effects could take months to go away. She had never seen reactions that severe. She did feel the dr here was on the right track and she is willing to work with him to reduce the driving 2 hours. So today's count was 267,000 WAY up from almost two weeks ago when it was 84,000. Maybe the horrible rituxan is actually doing something which would be nice given all the adverse reactions. Last treatment was end of February for rituxan and steroids all stopped on about the 10th if March. So she will continue to see the Dr here monthly and the one at Hopkins every 6 months. The next step will be promacta if she drops below 50,000. They also said we are good to go to Aruba! Bring on some sunshine and relaxation! Thank you all through this process and as we continue this journey.

Great news! I hope she continues to do well. Don't be a stranger, Mac!

I won't be a stranger...I have learned so much by reading this site and asking questions from experts. Everyone has been so helpful and encouraging.

Very good news mac - now you all enjoy Aruba!

Aruba sounds wonderful! Enjoy!

So my sister had her cbc today. Her last one was May 12th and her count was 267,000. Today it was 263,000! She stopped the dex and pred around the 10th of March. Last rituxan was enough of February. Is it safe to say she is likely getting a rituxan response at this point even though she didn't finish all the rounds. We leave next Saturday for Aruba so she should be good to go! We just have to take steroids with us in case she starts having symptoms.

Mac, that is great news! Enjoy your family vacation.

Mac:

It doesn't really matter which drug worked at this point - she's doing great! It could have been a combo; you'll never know. AT least she didn't go through all of that for nothing. I'm so glad that she is doing well!

Put ITP at the back of your minds and enjoy that trip!!

Hello! I did listen to you all and we put ITP aside (after the flight because the plane made me nervous) and had a wonderful time in Aruba! Thank you all for your help through this process. Counts are still good. She gets tested again at the end of July.

Good to hear you guys had a wonderful trip! Let us know how she's doing after the results are in.

Mac
Thanks for the update. Glad things are going well for your sister.

My sister went to her Dr. at John Hopkins yesterday. GOOD NEWS! Her counts were 263,000 and she is released to every 6 months! Thank you all again for helping "me" through this process.

Great news, Mac! Thank you for letting us know. She sure had it rough for a while and it's nice to hear another success story! Keep us posted.

Glad to hear the trip went well. Wonderful news on the every six months! Like a vacation after a vacation!


Had a co-worker just come back from a cruise almost missed her plane ride home because the cruise ship had to do a search for a jumper and could not stop till search and rescue showed up!

Mac
Thanks for keeping us posted.
Emily