Promacta experiences

After being on Prednisone almost every other month for the past three years, my doctor has finally prescribed me something new (Promacta). Just wondering if anyone has any personal input to offer good or bad on it? I had not heard of it prior to my appointment today. :blink:

I love Promacta. It is hands-down my favorite ITP treatment.
I used it for three years. It kept my counts in the 50k range just like it was supposed to do. Side effects were minimal, far easier to live on than any other ITP treatment I've used over the past 10 years. Heck, it did so well for me that I only had to see my hematologist every 6 months...it was an easy and stable treatment.

The downside....it is expensive. Some insurance companies will roll right with things and pay for it after you pay a reasonable co-pay. My old insurance did that with an $80 co-pay per month.
Other insurance companies will make you jump through lots of hoops and it'll still be expensive for you. My new insurance does that.

GlaxoSmithKilne does have a payment assistance program to help out. The amount of help depends upon the dosage, your income, if you have insurance, how good/bad your insurance might be, and some apparently random factors which I still cannot figure out. It is great if you fall into the right categories.
Some day I'll figure out how to afford it again.
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I'm at about 120 days and still determining best dose for me. Went from 6 to 240 in 8 weeks, then cut the dose in half. Had mild heartburn the first week or so, nothing that needed treating. I am fairly diligent about the empty stomach and at least 4 hours before intaking calcium or vitamins. (Note the latest newsletter about juices also). Since I'm allergic to dairy it's not that tough and I do cheat a little since I like cheese, but it does mean I have to take the supplements.

My company has a prescription benefit as well as Medical insurer. Mine is covered under the prescription benefit through the Specialty Pharmacy. I get a 90 day supply for a single copay.

When the TPO's first became available, my Hemo leaned heavily toward NPlate, but I think that was more his oncology experience with people not following daily drug protocol and knowing with weekly injections he could monitor. Since here in the US most of us are not allowed to self-inject (they can in England), when my standard treatment of Winrho failed after a years remission, I had convinced him Promacta was better for my work and travel schedule. I am the first patient in his practice on it so we're learning together.

I just started Promacta today. Paid $1436.48 for it. Not fun. I am just praying it works.!!!!

So, began the Promacta on Thursday after the doctor called and informed me my count was at 6k. I have been following the empty stomach thing, haven't had too many issues, but have had naseua still and stomach pains. What vitamins do you guys take? When the Physician Asst. called and I told her the main dr had put me on Promacta and no longer Prednisone, she told me you have to take it forever basically? As in you never stop taking it? I mean I'll do that for now or as long as I can afford it (I have a 50$ copay monthly, and that is a lot when you dont have a job!) but I really don't want to be on medication for the REST of my life (Im only 25). Also, I kinda lucked out before my ITP got crazy and was able to have a healthy now 3 year old, but of course I long to have another...but I haven't seen any studies related to being on Promacta and pregnant, I suppose it's not a good idea. Thanks for the input

Have not posted in years but had to get my experience (last month) down for the record. Began getting rituxin drip once a week and at same time taking Promacta daily. As I hit the 2 1/2 week point had very painful pain on right side. Trip to the ER resulted in a CT scan where upon they diagnosed an infection and sent me home with an antibiotic. Unfortunately, this did not seem to be the only problem if it was at all. The following week was back at another ER and had another CT scan but also a scan with contrast. The contrast proved invaluable and possibly life-saving as a blood cloth in my right kidney was disclosed. Rituxin and promacta were discontinued immediately and Heparin started to break up the clots (developed some pulmonary embolisms as well). Anticoagulants have made a tremendous difference and hopefully will resolve the clotting issues.

My gut feeling is that Promacta played a part in the formation of the clotting issue - or possibly the combination of promacta with rituxin. I believe more research is needed on both drugs - especially promacta.