Crashed with Promacta

Luca,

I have been all over the place with Promacta. Most of the time it works well. I've also been on 3 different doses based on counts. I was up to 375 so my doctor lowered me in may. Then I went down to 40 so had to be upped to 25 mg again.

I wish I knew every reason for the immune system to be even more active than usual ( my theories for my own body are illness, stress, my doc thinks it could be seasonal/ weather related). Even a tiny cold will drop my counts to the teens even on a TPO.

My advice would be to up your dose, and give it some time. We have seen a trend of rebounding counts on Promacta, as your doc has also observed. I think my doc might be on to something with weather changes. Mine have dropped as it's gotten hotter. Are you having symptoms?

Thanks for the input guys. Slammed, you mentioned increasing to as much as 100mg if necessary; do you know of anyone who has actually gone that high? The drug co. states 75 mg is max and my MD is very conservative, so I doubt he would try it, even if that was the only option. Vdeutsch, yes I get symptoms below 20K; usually bruising, but otherwise feel OK. After 4 days on 75mg, I went up a measly 1K (to 13K), so I'll just have to be patient and see what happens!

Luca,

I believe Amber has taken Promacta 100mg at one time. I think it takes about a week or so for Promacta to kick in. Does steroid work for you? If so, I would take steroids with Promacta if you doctor doesn't want to increase Promacta. When I crashed, I was at 7k, with just petechiae, no bruising...so this was the first time my dr didn't send me to the hospital.

BTW...I take my Promacta right before bed.

I take mine right before bed but get ger vivid dreams. 75mg is the highest dose I've been on.

Luca,

I don't know how you respond to steroids but I do not respond. I know Dbean takes an autoimmune suppressant and Promacta. You may want to ask about his regimen. I know my doctor said I would be tried on that regiment if Promacta didn't work.

Interesting; I don't know if Dbean is monitoring this, but I'll try and ask. No, I've never tried Prednisone with Promacta, nor any other type of immunosuppressant. I did ask about Cellcept, but my MD says he wants to stay away from drugs with yet other side effects. Other than Prednisone, I know of no "mild" immunosuppressants that my MD would accept, and I'm not sure he would accept Pred. on a long term basis for the usual reasons. I'll ask when I see him again...

Luca,

To rebound from my crash, I was on Prednisone and Promacta for about 2 months (with tapper off, starting at 60mg of Prednisone slowly. My count went to over 440k so we tappered off slowly, stopped Prednisone, count was still up, then did Promacta 25mg/50mg every other day, then finally at 25mg where I am now. Now, I don't have to go and do labs for 2 months! That's the longest I ever been without labs...it's kinda scary, but I'm trying to enjoy it.

How are you doing?

Luca,

There are a lot of side effects. You have to weigh the risks vs rewards with any drug

Hi Luca,

I think I have it in my in-box that Dr. Bean takes the following:

Cyclosporine A 150 mg
Promacta 25 mg

He mentioned that this combination works for him.

Thanks Dee Dee; I'll check with my MD!

35K this week and yes down from last week. Talked to the nurse and she said "not to be negative but this is a good as it gets for you" I busted out laughing and told her I've been saying that for months. Dr. May said to stay on Pred 30mg and recheck next week. She also told the nurse to remind me of our last talk (refractory and my new normal will be low) just as long as I'm not bleeding and no other symptoms just to be careful. Yes it is just a number and I just have to be aware of my body.

Amber,

You've got a good attitude!! And, as long as your symptoms are doing okay--that's what's important. Just hope that you stabilize at this point. Good luck to you and hope you are feeling okay.