Promacta- any success with 25mg?

I've started on Promacta 25 mg for 2 weeks now. Wondering if I should increase dosage or give it more time? Anyone have platelet increase with lowest dose? How long did it take to see an increase? My counts are 10-20K with 7.5mg prednisone. No increase with Promacta so far.

Minor side effects with Promacta, a slight nausea at first and lack of interest in food, which is not bad. The prednisone made me anxious and have the munchies- I gained 20 lbs last year. I could live with that if it wasn't all in my upper body!

I don't have to pay for the drug because I'm on the Promacta Cares program. For people without prescription insurance and lower income its great. Doctor has to enroll in it.

My story- I lived with low platelets 10K-14K for 2 years when first diagnosed 2008. Had no problems with bruising or bleeding. Then count dropped to 6K and saw a Hemotologist. Began prednisone at 80mg tapered to 40mg over 6 mos. That was tough, I had so many side effects- high blood pressure, palpitations, trembling, skin crawling, anxious, even sleeplessness with hearing voices- the mental chatter was so loud! Hemo wouldn't let me taper below 40mg. He was very domineering and wouldn't listen to me at all. Found another hemo- super nice guy with a great office staff. Listens and suggests, tells stories of patients with ITP, but lets me decide. Its always good to shop around if you're unhappy.

Next was Rituxin. I had no side effects just a craving for ice water even in cold weather. And ice water tasted so good! Just delicious. I noticed after 6 mos when Rituxin was wearing off, I lost my desire for ice and water lost its great taste. The Rituxin helped me to taper the prednisone down to 2.5mg. Never got the high counts but it felt so good to taper the pred. My counts were around 20-30K with 2.5mg. But when Rituxin started wearing off after 4-6 mos, the counts dropped back to below 10K and I upped the dosage of pred. to 7.5mg.

I'm trying Promacta in hopes to get off the prednisone. I've been on it for over a year. Docs push for splenectomy. But I want to keep my spleen, I'm kind of attached to it!

best wishes to all ~ posey

Why not try Rituxan again? For some of us it worked even better the second time. You didn't say how high your counts got on Rituxan - Erica

The 20-30K that I got on Rituxin were my "high counts". And that was with daily 2.5mg prednisone. But before the Rituxin I couldn't taper the pred. lower than 20mg without my counts crashing. So the Rituxin did something.

And yes, I did ask hemo to try Rituxin again. And I argued that other people were getting responses the second time. I stated that my hemo "lets me decide", but this time he was firm since all I got was reducing to 2.5mg prednisone instead of what I'm taking now which is 7.5mg. He felt that wasn't enough response to warrant the risk. His argument was that its against his ethics to prescribe twice a drug so potent and risky when it clearly is not working.

I got another opinion and second hemo agreed that the Rituxin didn't work well enough. He is a respected research oncologist/hemo in north California. His research showed that the people who got a response the second time, were those that got at least some higher numbers (over 80-100K) the first time.

Another factor in all this is the expense. Rituxin cost me $5000. out of pocket. Still I would try Rituxin again, but for now, I had to decide if I wanted to keep going around to different doctors or move on to Promacta.

It sounds like you are getting very good, current and informed advice. At the ITP conference I also learned that a full response (normal counts) to Rituxan is a big predictor of success long term with Rituxan.
Erica

Thanks Erica for the validation! Its so tough making these decisions. I appreciate your comments.

I was concerned that my favorite hemo wouldn't like it if I got a second opinion. They would be annoyed with me, maybe wouldn't want me as a patient anymore, too much trouble. ha But I did it anyway and the favorite doctor was delighted! No ego or competition at all. He and staff were very interested in what the research hemo had to say. Nurse practitioner said the doctor makes hard decisions every day with these chemo drugs and peoples lives in the balance. Its great when someone does the footwork to make their own informed decision. wow loved that

Something interesting the second-opinion research hemo said was that they think ITP is caused by different things in different people. Some people it might be B cells, some T cells, or sluggish bone marrow, or other causes. That makes me think that possibly mine might not be a problem with B cells since the Rituxin didn't work. Possibly the T cells or something else.? hah its a puzzle!

Hi posey cute name!
It does sound like you have some very educated docs, that always helps. That's interesting about the research doc saying it's different things in different people. I hope there is some discussion of that at this site.
I've been diagnosed since 2/2010. Prednisone did nothing for me, except for the horrible side effects! First round of Rituxan brought me in the safe range 30-90 for almost 7 months. 2nd round of Rituxan did nothing at all. Just finished 5 treatments of IVIg, waiting for my Promacta to get here. Only costs me $2.00 co-pay. I'm excited for that! I'm starting at 50mg per day. I think asking your doc if you should increase the dose is an excellent idea! I'm interested to hear how your doing on it. Maybe we can compare side effects!

Tidbit: Rituxan affects T cells also

"The mechanism of action of rituximab in ITP is assumed to be due to selective depletion of CD20+ B cells, which affects autoantibody development.2 Although the pathogenesis of ITP is autoantibody-mediated, IgG autoantibodies are driven by T-cell–dependent mechanisms and many reports have described several consistent T-cell abnormalities in ITP.3 The efficacy of a B-cell–depleting therapy, despite the presence of autoreactive T cells, led Stasi and colleagues in this issue to demonstrate that the therapeutic efficacy of rituximab is actually due to normalizing abnormal autoreactive T-cell responses in patients with ITP."

bloodjournal.hematologylibrary.org/cgi/content/full/110/8/2784?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=Rituxan+T+cells&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

I needed more than 25mg/day dosage of Promacta.
I started on 50mg a little over a year ago. Count went from 4k to only 14k over a couple of weeks.
Increased dosage to the max 75mg and count went up to 32k in a couple more weeks.
I took 75mg/day dosage for about a year, then we backed it down to 50mg. Seems to be holding in the mid-50k range now on 50mg/day.
I'll find out more in a few hours when I see my Hematologist for the 3-month checkup.

Overall, Promacta has been far better for me than any other treatment I've used.
.