NPlate Next?

I have ITP and Lupus. For the last year and a half I have been on IVIG as a maintenance med every other week, two days in a row, ten hours each day. In the meantime the doctors have tried various treatments to get the lupus to go into remission: oral steroids, pulse steroids, rituxan, cellcept, and cytuxan. Although some of my lupus symptoms have improved the platelets continue to fall every other week frequently to levels below 10k.

I saw James Bussel last week and he is recommending NPlate which seems to me would be a maintenance drug until the rheumatologists can find something to put the lupus in remission.

Could anyone on Nplate tell me about their experiences? How do you travel on weekly shots especially for more than a week and to other countries?

Anyone go off it, why, and what happened to your platelets?

I see nobody has answered you so I will. I was hanging back because I'm in the UK on Nplate and self inject so the travel thing doesn't apply as I simply take it with me when I go away. But I can tell you my experience on the drug has been good. I started off slowly with having to increase the dose each week but soon got stable and then had to decrease the dose. I'm now on a tiny weekly dose and always have a platelet count over 50 which is the aim of the drug. So it's been a success for me.

Why not try Promacta? It's similar and comes in pill form, so travel/injections isn't an issue.
It's also quite nice for folk like myself who don't care much for needles.

Since Nplate and Promacta are both 'maintenance drugs', stopping either one will usually cause a fairly immediate drop in platelet count.
.

The doctors don't want to do promacta due to the risk to the liver.

Every treatment has risks involved. Nplate has quite a number of scary of risks itself.
Part of the Promacta treatment is to monitor the liver at the same time as monitoring platelets. In a year and a half now, tests show my liver has remained normal and unchanged.
But, everyone is different.....the only thing everyone apparently agrees upon is 'Sara Lee'.

Flashmom,
Interesting that rituxan did not help. I believe most of us here who have both ITP and lupus were helped by rituxan, although several of us had bad reactions to the rituxan. Can you tell us a little more about the rituxan - did it do nothing? Did you react?

thanks
Erica

I tried taking the natural Papaya Leaf Extract 2 weeks now and my platelets stayed the same at 60. Now the doctor wants me to research the use of NPlate what is it, and I am 65 I took IVIG in 09 it held me till now, the bill was $54,000 for 5 days and I paid $3100 afer my insurance picked up the rest. Is Nplate injections only? I do not know what to do.

nplate is injections, promacta is a similar type of drug but a pill. Interesting that your doctor wants you to research, that seems like a good plan but maybe he could help you with the research.

If IVIG works that well for you, maybe that's a good option too.
Erica

I need to find out the cost and my out of pocket cost. I just finished paying the 09 bill in Jan of 2011. If the NPlate is less costly and less invasive, as I went into convulsions at the end of my treatment than I guess this is the way to go.

I do not want to go on Predisone as I am heavy and am trying to lose weight ...thankyou for responding. My doctor was going to send me literature but I find this site much more helpful. How long does one have to take it and it states that you just cannot stop it either are you wiened off of it like they do with predisone?

No, you don't taper off of it. It is a maintenance drug, meaning that you have to keep using it to keep counts up. If you stop it, counts have been known to drop quickly. You'd keep taking it until another treatment option comes along or until you happened to get a remission.

However, some people find that over time, they need less and less of the drug and can maintain on lower doses.

So you never come off of it?? That is scary

With IVIG 1 treatment held me till now...but the cost factor....

I am so scared to introduce something new but ofcourse doing IVIG is a risk too, 10,000 donors and they screen but you never know....Have you ever gone on this drug NPlate

Yep...they are 'maintenance' drugs. They make no pretense of being a cure.
Both of them work by increasing platelet production, so that you'll have a few platelets remaining after all the ITP destruction is over. For the average person, counts will start to drop in a few days after one stops taking them.

I am not sure about the cost of Nplate, but I believe it is similar to Promacta.
A 75mg/day dosage of Promacta runs just under $8,000 per month around here...around $96,000 a year.
I am currently taking the 50mg/day dosage and it's a bit less expensive at about $6,000 a month.
My insurance picks up all but a $60 a month co-pay.

These two drugs will probably never go down much in price. They were developed specifically for a disorder which relatively few people have. They won't be going 'generic' anytime in this century.

.

So like IVIG I stopped after 5 days and my platelets stayed up for almost 1.5 yrs. So when you take the injections you do the same...they stop you once your platelets remain stable correct???

I am in CA on MedicAre PPO I felt fortunate enough for the bill to be picked up all of $3100 and I went on a payment plan for 1 yr and paid it off thru the hosp.

I will check with my insurance today to see how much gets covered on this one.

There's anectodal evidence springing up that Nplate does sometimes send people into remission. There are now trials being done on new patients to see if they can push them into remission straight off. For others like me, the dose and then the frequency steadily become less and less. So instead of using it weekly some are able to use it fortnightly or monthly or whatever. I know there is one person here using it only every three weeks. Also the warning of counts dropping even lower after stopping are just a warning and the percentage of people that happens to is very low.

There is a paper written about the drug also appearing to improve treg function which is interesting and the effect may be more long lasting.

bloodjournal.hematologylibrary.org/content/early/2010/08/05/blood-2010-04-281717.abstract

Ann, that is an interesting article! Caitlin was one of those who had worked her way up to the max dose and is now on the minimum dose. Her count yesterday was 178 so she is still doing so well. I asked the dr in charge of the study (one of the drs working with Dr Bussell on this) whether Caitlin's body is making its own platelets or if it really is the mini amount of Nplate that she receives helping. He is going to call Amgen to see if they will be willing to allow Caitlin to go off the drug (as part of a study) to see what happens. He said just one week, but I am hoping they will allow as many weeks as it takes for her to drop below 50 before they give her the drug again. Otherwise, how will we ever know that she is in remission? I really think she is in remission and if her counts can stay above 50 on its own without Nplate, then I am happy with that. I am no longer caring about the actual number as much as I am about the symptoms. When her counts get below 30, she starts bruising badly and that is to be expected with everything that she does activitywise. Under 20, the petechaie shows up in her mouth and the heavy nosebleeds start so we really try not to go there.

Norma - 'never' is a really long time, so I would not say that you'd never go off of the drug. As I said, you'd use it until something else came along or until you go into remission (which sometimes happens).

I was just wondering if there have been any studies concerning the long term affects of NPlate?

It's a new drug so no long term studies yet.
Erica

Not sure if this will be helpful at all but I have been on NPlate for a year. My counts bounced around a lot and I needed to continually have my dosage increased to maintain positive results. It is no longer working and I need to get off it. I am at the point where no other treatments work for me but I generally do well even with my current count of 2.

I found NPlate to have the least side effects of any treatment and was easy enough to have it administered. I live in Canada and had it covered through my work health insurance under compassionate grounds. The cost was 1100$ a week but I only paid a 6$ dispensing fee. A nurse at a clinic administered it at a pre-booked time so I did not have to miss work.

It was a great treatment option- quick and just a little ouch. However, after a year of weekly injections I have a lot of scar tissue that has developed.

Good luck! This drug allowed me to go downhill skiing this past winter- my first time in approximately 16 years given that I actually had a count with a double digit.

Promacta has a 4 percent liver failure rate. As my liver levels have been elevated through this whole flare the doctors do not want to take the risk so that leaves n-plate. My counts go up for a week after IVIG and then fall below 10k.