Promacta coming up...expense???

I had the appointment with my Doc. today, along with another IvIg. Surprisingly, this appointment he had a turnaround and said he would not recommend a splenectomy...I was in shock. For three years (5 years diagnosis, but only 3 yrs with him) he has been recommending a splenectomy and I have been saying that it is not a good bet for women over 55. (i'm 65) But today I was willing to give in...and he says that would not be his option. Ha.
He then said he had success with decadron pulse. Oh yeah, I explained I had it three years ago, felt psychotic, ate like a ravenous beast, and it only brought me up to about 50 for a month. He was still going to recommend it again...or...promacta.
I just started to cry. I have never cried before with a hematologist or any doc..., but it just seemed like all the choices left are miserable ones. I am worn out and so tired of trying to make the best of horrible decisions.
I told him I was not going to make the choice...that I would just do what he wants for the first time. He still seemed to be leaning toward decadron, and I started to cry harder. He left the room saying he would not want me to make the decision when I was this upset, and he would give me a little time. I told him it was his decision, and he said he would take the time and think about it.
When he came back he said he was recommending Promacta. In doing my research, it may cost me the farm. It looks like it may cost about $4,000 a month, and with my insurance it will still cost me about $1,500. How are people managing? I am not sure I qualify for Glaxo Smith Kline assistance...one of those people who are just above their financial aid guidelines. So, not only do I have the horrible fears of the side effects, but also the fear of losing all of my assets.
I think I am in for bit of a long spell of depression. None of this happens for about a month, because I now have to wait until my platelets drop to 30 before we begin.
Can any of you let me know how you are managing with the treatment and ...the cost.
Help!!!!:blink: and thanks
Jean

Hi Jean. Other than the decadron what other treatments have you tried? I am on Promacta. No terrible side effects for me. None at all actually. At least on a daily basis. Only been on it less than a year so I can't speak of long term effects yet. I know Jack has been on it for a while and last I knew he didn't have any long term effects. He even mentions weight loss but I haven't even experienced that! Darn it! I only have a $2.00 co-pay every month for mine. I get it through a program called PromactaCares through CVS Pharmacy. I'm sure your doctors office can help you with any other programs out there. What a relief that your doctor decided against splenectomy. At first my doc didn't mention it, but he mentions it everytime I see him. It's not an option for me. I'm only 47 but the way I see it, God gave it to me for a reason and I'm not ready to part with it yet!

I can't blame you for not wanting to repeat a Dex (Decadron) pulse. I hate the stuff myself. It does work for me as a 'quick fix' though....will usually bump me from 4k up to 20k or so. But I always drop almost as soon as I stop taking it. I also can't blame you for wanting to keep your spleen.

Promacta has been working for me for a couple of years now. Keeps me in the 40k-50k zone on a 50mg Rx. Side-effects are minimal, when compared to other treatments I've tried. I am 59.5 years old.
Interestingly enough, the price has dropped some over two years....but 50mg is still nearly $5,000 a month. My insurance co-pay just increased from $60 to $80. So I pay $80 a month for Promacta.
When I first starting taking Promacta, a 75mg dosage was around $9,000 a month. That is crazy!

Have you tried any of the immune suppressants yet? I have used both Cyclosporine and CellCept for awhile. Each one eventually ceased to work for me, but they were fine while they worked and had fewer side-effects than steroids. I managed to get a couple of years from each one...in the mid-30k range...then each just stopped working. After Cyclosporine failed, I switched to Promacta.
But IIRC, generic Cyclosporine was only a $5 a month co-pay and was far less hassle than steroids.

Jack

Well, I have crunched the figures. It appears as if I will have to meet a catastrophic (insurance term) deductable of $4,700 with my United Health AARP policy.
I have really come to the conclusion that repeated treatments with Decadron are not worth the problems of the side effects.
I have not tried any of the stronger drugs that come from the cancer treatment category. Their side effects sound really horrible.
At this point, I am going to ask the doctor to make a decision between IvIg and Promacta.
I wrote out a decision tree with each medication that I have tried, and others that he has suggested. I wrote the treatment effect as well as adverse side effects. I will send it to him.
I am not behaving like a victim anymore, and I like the way I have gleened information from all of you as well as from insurance and Glaxo Smith Kline (Promacta producers)
Thank you for sharing your experience. Five years of this condition and still I can have a lot of anxiety. It is good to have a group that can settle it down.
Jean

Hi Jean and all, I'm new to this so bare with me. My 18-year-old, daughter has been on Promacta for over a year now. She does just fine,no ill side effects. Her counts and liver function are monitored on a regular basis. She was unresponsive to all treatments including a splenectomy. Her counts hover from 90,000 - 100,000. The Promacta Cares program is an excellent patient advocacy group. Use them. They can help you with payments. The cost for her 50 mg dose is $4,400. Thankfully insurance for now is picking up the tab, but it's starting to get dicey. Try not to stress too badly. It's understandable since you've only been dealing with ITP in recent years. Our daughter was diagnosed when she was 2 and spent most of her growing years with a count around 40,000. I'm confident you'll be Ok. Promacta in my eyes is a wonder drug.
Good luck,
Paris

Paying for the first month of Promacta should meet your catastrophic deductible of $4,700.
I've used Promacta for a little over 2 years now. It started out just under $9,000 a month for 75mg/day. But the price has gone down quite a bit with it being released and all. My 50mg/day dosage is just under $5,000 a month now. It started at around $6000.
I doubt we'll ever see the cost of Promacta get down to Prednisone levels, but it is coming down.
I now have an $80 co-pay (up $20 from 2011).....$960/year in co-pay.
When I first looked into it, my insurance said I would need to pay $2000 up front, then they'd pick up the rest of the year's cost. But when I actually filled the script, it turned out to be just a normal co-pay type of arrangement.
The good news is, I now pay less overall in co-pays for Hema visits and testing, since I only have to go twice a year. Promacta keeps me nicely in the 40k-50k range, without liver issues.

Good luck with Promacta. I know that I am really glad I started taking it.

When I let the doc know what Promacta would cost he gasped and then said I should check out Nplate. Because Nplate is administered in the hospital/dr's office, it is a "class b" drug, and the patient's responsibility for the drug comes under the max for all doctor's visits and medicalvisits. My total yearly max is 1,000, so, after the first month I should have no more expences for the year in that category.
Insurance is a huge maze.
The bummer is that I am now tied down to weekly injections. No travel... and waiting in the waiting room for the hospital pharmacy to prepare the script every week is pretty boring, time consuming, and anxiety provoking. I'm not sure how it is working. I did have leg cramps last night...hoping it is not related, but after the prednisone withdrawal, I keep Magnesium and Postassium on hand for quick relief.
Thanks for sharing your experience with promacta with me. It sounds like a far better drug, and I may switch over. For now Nplate is on my platter...couldn't resist the pun.