Promacta or Nplate?

I was diagnosed with ITP about a year and half ago, I started with prednisone for about 9/10 months, then tried rutoxin (not good for me- terrible side effects) and Ive been treated with ivig now for maybe 5/6 months. It has been going fine, just normal ups and downs in platelet counts.
But last Friday my numbers dropped from 140 to 74. (this is the lowest I have ever been on ivig) So my hemo thinks I may be failing ivig. He gave me the opition of nplate or promacta. So he wants me to go back in two weeks and get a cbc, and if my count is still low he wants my decision on which new treatment I want to try.
Truthfully: I dont want to do either. I am honestly scared sift to try another treatment. So I am wondering if maybe anyone has any advice on which I should do (or not do). Any help would be greatly appreciated. I am really stuck on what to do here.
Thanks
Cass

What is your normal count without treatment? The idea of Nplate and Promacta is to get a count of about 50 so you would want to wait until you were well below that before starting.

But if you have to choose between those two then the differences are that Nplate is an injection once a week whereas Promacta is a tablet each day. Depending where you are in the world you may have to go to the doctor each week for the injection although some places.. the UK for example.. we can self inject 3 weeks out of 4. Promacta also has some restrictions about when you can take it.. you have to not eat anything with calcium in it for several hours, some say 4 hours, before or after it. Promacta can give liver problems whereas Nplate doesn't. Oh and Nplate is slightly more expensive if that's a consideration for you.

My count without treatment, Im not too sure. I have always been pretty high with treatment. I was hospitalized with a count of 14.
I am all for taking a pill as opposed to getting a shot every week. But I am concerned about the liver damage side effect. Because with every other treatment, it seems if it can happen, it will happen to me, kind of thing. And Im also concerned because my count has never been this low, but it still doesnt seem low enough to need nplate. I dont know, Im just at a fork in the treatment road I guess.
Thank you

I opted for Promacta (over NPlate) for two reasons:
I don't have to actually go to the hospital every week for injections and the side effects seemed milder.

A couple of quick notes here.....at least in the USA;
1. Promacta is used to get your count ABOVE 50k, not "about 50k". You will be monitored closely for dosage adjustment.
2. Promacta dosage varies: 1, 2, or 3 tablets a day. Each tablet is 25mg. 25mg/day is the low dose, 75mg is maximum. Again, this may be different in other countries.

I've been in the Promacta Cares program since January. Again, if you are located in the USA, you and your Hematologist will be required to join that program. No other way to get the drug here. I believe it is the same with NPlate, different program is all. I have no idea how other countries distribute these drugs though.
NEITHER of these drugs are cheap. Perhaps Promacta does cost less than NPlate in some places. But it is still expensive. We are paying for the research done to create a new drug specifically for a rare condition. My 75mg dose of Promacta costs $7,642.32 USD per month (90 tablets). About $84.91 for every pill I take, or $254.74 per day. Luckily, my insurance covers all but a $60 monthly co-pay.

For me, the continual side effects of Promacta are; nausea, creepy crawlies (skin crawls), and loss of appetite. But hey, I've lost over 10 pounds already.
I'm interested in seeing how long Promacta works for me. I seem to get about 3 years on the average before needing to change medication. I'm also interested to see if I can back off to a lower dosage soon (I hope).
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Cass, and a Specific request to weirdjack; I tried Nplate for 16 weeks and the results were sporatic, erratic and unpredictable. The only side effect was indigestion. I will start Promacta later this week. I am particularly interested in weirdjacks' response and side effects to the Promacta.
Weirdjack, please post your progress and any problems........Thanx

Well hairball01, I'll keep the group apprised.

From everything I have read about Promacta, side-effects vary greatly. I know, what a shock! I can only relate mine.

EDIT: I should preface the rest with this: Promacta has given me a good response with the LEAST side effects of any treatment I've had in the past. While it may have weirdness, it far easier to live on than steroids, immune suppressants, etc. And I haven't caught a cold in four months!

From day 1: nausea, upset stomach, creepy-crawlies, loss of appetite, dizziness, exhaustion, and I could not sleep well. Luckily, I do not get any headaches from Promacta!
Currently: nausea, creepy-crawlies, and loss of appetite are the primary side effects for me after four months.
"Creepy-crawlies" feel sort of like a thousand tiny Celtic spiders performing Riverdance just under your skin...all over.

Oops.....I almost forgot the oddest side effect I had: I STANK! As silly as this sounds, it was REAL and it was not pleasant for me, my wife, nor my co-workers. I mean I perspired a very pungent sweat. I'd shower, go to bed, then wake myself up because of it. I'd shower in the morning and within an hour it was as if I had never touched soap nor water. I did not find out why, nor if that is something others have experienced. That began on week 2 and it took me a month or so to figure out what would work to treat it....I went through many different deodorants and regimens until I found one that worked for me. Like everything else with ITP; you treat and adjust until you find what works for you. But that has to be the weirdest side-effect I've had.

To try and offset the nausea, I take my dosage around 2:00am to 3:00am. That way I sleep through the "waiting period" before and after taking Promacta. I also sleep through the worst of the nausea that way. By the time I get to work at 6:00am, I'm okay to eat a little oatmeal to settle things down.
I still have appetite loss. I eat probably 1/2 of what I used to eat. Just never feel very hungry. My stomach can be growling and I do not feel hungry at all. Go figure?

At the moment, I am still on the max dose. My hematologist and I agreed to give things a couple of months now to "settle in". I know what my danger signs are, so it's not a great risk to not check counts constantly at this point. I did get them checked constantly at first, but once it got me to 52k we decided to give it a few weeks before the next check....that will be on June 7th. I'm blissfully ignorant right now!

However, I moved a bunch of heavy boxes last weekend and expected black arms out of it. I ended up with one tiny 1" diameter light green bruise....whoo-hoo! I have platelets!
If I would have seen black arms as a result, I would only need to page my hematologist and we'd investigate. I'm also keeping an eye out for any signs of too many platelets, in case the stuff is working better than I ever hoped.

Sorry.....this really got to be a long post.
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Wierdjack: I guess always expect the unexpected. I recall during the first weeks of my initial 80mg prednisone regimen in 2004, something new developed most every week including adloescent acne (I was 62)and ED. And your long post was justified by the info and advice it contained. This is the kind of info that's the most helpful. Thanx.......

weirdjack wrote:

1. Promacta is used to get your count ABOVE 50k, not "about 50k".

But at the same time they say "Promacta should not be used in an attmept to normalize (sic) platelet counts". The prescribing instructions for Nplate say similar.

Wow, thank you guys so much.
I guess the only two problems I have now are that my platelet count is not 50 or below,and the possible liver damage.
So Im a little nervous to choose either of these treatments since, as of two weeks ago, my count is 74. Both are recommened for 50 and below-so Im just unsure of what to do about that.
And I was told that Promacta can cause liver damage. Weirdjack do you get tested for liver function?
Thank you for your help. I am really still so unsure on what to do. Im 19, and am just too naive to pick what is right for me. But really Ill take all this into consideration

74 is a good count and no haematologist would want to treat at such a count. It's a great count. You can do anything at that count. Enjoy it.

There seems to be two schools of thought: There are those who expect to see counts in the 150k and above range as the 'normal' range is 140k to 450k. And there are those of us who hope to consistanly maintain counts at or in the 50k range. I would be delighted to have a predictable, consistant 50k count without using Prednisone. As for Promacta vs NPlate; Your bodily response will dictate the better of the two. Your initial choice is a coin toss. Or do you prefer a daily pill with dietary restrictions or a weekly shot in the arm?

I have had weekly Nplate injections for 3 1/2 months. My count has gone from 14,000 to 120,000, back to 34,000, and now 121,000. I am to continue for two more months, then Doc will reevaluate. My count has been better these past few months than for the last many years...comforting.

I have had the Nplate injections since early march and it was starting to work and then has stopped all of a sudden. I used to get headaches, aches and pains in my joints, indigestion. The doc has stopped it for a month to see if it was that which made my white and red cell counts over produce.

A few of us on the old board said that our white count went up a bit when on Nplate. I think we were all usually low and it took us to the normal range. Nothing like yours Lauren but it may show something.

Looking back at my N-Plate response: One week I had a 206k count, skipped the weekly injection, then dropped to 12k the following week. My 16 week program seemed to be totally varialbe and unpredictable. Promacta is also a TPO and I'm scheduled to start the regimen soon. I think Wierdjack (earlier thread) also started the Promacta program.

Currently Winrho is working for me, but if it should stop working, my hemo wants to go with Nplate. He'd prefer it to the pills because he's sure of patient compliance with it, apparently he's had a bad month with his oncology patients and how they take thier meds. He's saying things like if they insist on oral meds, then he wants to see them once a week and they have to bring all their bottles in so he can count the pills. I challenged him a bit and he admitted I was not to lumped into the generalization.

Personally, if I have to do a CBC weekly, I don't see too much difference one way or another for me other than working around some travel if needed. Of course, his office is only a block from my work, they do the CBC onsite with results in 5 minutes and will make a 12:00 pm appt so I can do it over my lunch hour. I did plant the idea that I was seeing posts on the boards where the patient could self-inject NPlate 3 out of 4 weeks.

hi_mynameiscass wrote:

So Im a little nervous to choose either of these treatments since, as of two weeks ago, my count is 74.

I just reread your initial post. While the 74k looks really good to me, you have that from IVIG treatment. Promacta might get you off the IVIG treatment, or it might not. It may not give you a count over 74k, but it might be easier on you. Everyone is different. I will do most anything to avoid an infusion though.

And I was told that Promacta can cause liver damage. Weirdjack do you get tested for liver function?

Absolutely. I get two vials tested...one for platelet count and one for liver info. Promacta doesn't seem to bother my liver.

Just a question Jack... What is your platelet level without treatment?

One thing to consider when deciding cost between the two options. How much will the insurance cover for each option? I don't know about the NPlate, but if the insurance will pay at 80% until max out of pocket reached plus a copay, That may be less out of pocket than the Promacta option. I checked my Rx for Promacta and it would likely cost me (after the insurance paid it's share) nearly 700 a month. If my medical will cover the NPlate as in network at 80% + $25 copay/Visit. I would cap out the 80% at $3000 (and that can include other sources of medical expenses) + 1300 for the dr. visit copay. Much less than the 7000+ for Promacta Rx copay.
The one question that I have on the NPlate, what if you are going to be out of town?

Holy thread necromancy Batman! This thread has been dormant for 2 years.

I see that I didn't see a question which was posed to me two years ago though....so I'll answer it late:
My count was 4k prior to starting Promacta. I bottom-out without treatment.

As for cost? It's all an insurance thing. I currently pay an $80 co-pay every month for Promacta.

azohawk wrote: One thing to consider when deciding cost between the two options. How much will the insurance cover for each option? I don't know about the NPlate, but if the insurance will pay at 80% until max out of pocket reached plus a copay, That may be less out of pocket than the Promacta option. I checked my Rx for Promacta and it would likely cost me (after the insurance paid it's share) nearly 700 a month. If my medical will cover the NPlate as in network at 80% + $25 copay/Visit. I would cap out the 80% at $3000 (and that can include other sources of medical expenses) + 1300 for the dr. visit copay. Much less than the 7000+ for Promacta Rx copay.
The one question that I have on the NPlate, what if you are going to be out of town?

once they have your dose sorted you can self inject the Nplate. My Hema specialist gives me 3 weeks worth.