Promacta treatment update...1 year

It's been almost a year since I started on Promacta (after 7 years of other treatments).
My count yesterday was 56k. Quite good for me.
I'd like to say the side effects have gone away, but they have not. I'm used to it though.
Anyway....on November 29th, my hematologist reduced the dosage from the 75mg/day max I've been taking, to 50mg/day. An experiment to see what would happen. I initially dropped from 64k to 45k, but seem to be stabilizing in the 50's now.
My spleen and I had a party to celebrate.

Congratulations Weird Jack! Thats great that your count seems to holding around the same level. I am on 50 mg currently, and my count is swinging between 70 and 140 each week. The side effects I experience are nausea, headaches, stomach upset and aching bones and joints. What side effects do you have?

Vanessa

What side effects do you have?

Well Snowgoose, it's about like what you have.
Initially, I experienced; nausea, creepy crawlies, fatigue, dizziness, sleep loss, & joint pain.
It has settled down to; nausea, creepy crawlies, fatigue, dizziness, dry mouth, and heat sensitivity. I didn't notice the heat thing until summer rolled around. I'm good for about an hour in the heat now. I also didn't really notice the dry mouth, until dental check-up time.
Nausea is #1...so I take the stuff between 1:00am and 3:00am....sorta let things settle until I get up at 5:00am. During the day I need to make sure I have something in my stomach. If I neglect this, I get sick. I did lose some pounds over the year though....got rid of some of that years-old weight gain from the initial diagnosis and 6 months of Prednisone.
The benefits far outweigh the side effects though.
I only have to take two pills once a day, I don't feel like slugging everyone who looks at me cross-eyed (steroids). Some real fun is playing/singing in a biker bar for 5 hours in the middle of two-week course of Dextramethasone! Did that more than a few times.
I also don't catch every single cold or flu bug that comes my way (immune suppressants).
Bottom line for me is: Promacta has been far far easier to live on than the other treatments I've tried over the years.
Besides, I get a real kick every month when I read the Walgreens prescription receipt that proudly proclaims "You have saved $7648.42" .... only costs me a $60 co-pay.

BTW: What happened to the 'Preview' button?

Oops...I neglected to mention one side effect...a really odd one. I'll mention it just in case I am not the only person to go through it with Promacta.
From the 2nd month through around the 5th or 6th month, I stank! Not just normal body odor, it was bad....even I couldn't stand myself. I was taking 3-4 showers every day and avoiding people for those months. At least B.O. didn't matter in a biker bar though...
I have no idea why this occurred.....metabolism changes most likely. It took time, acclimation, several deodorant experiments, before this stopped being an issue. But it was most unpleasant for me and those around me. My poor wife bore the brunt of it. Back to normal now though.