nplate and vacation

I'm a little steamy under the collar tonight. I am trying to go on a vacation out of state and called my doctor to request an arrangement to get my nplate shot in vermont, where I will be vacationing. I was told it could not be done. They said another state would not take his order because he was not licensed there. I could not believe them because this just does not make good common sense. When I protested, the nurse said that I could not go on vacation. I asked if I could dose on Friday instead of a Monday and then 10 days later on a Monday when I return. The answer was that I could not dose more than one day sooner or one day later.
Nothing about this sounds reasonable, and once again I am on a poor me streak. I went to the nplate web site and they said they could assist me with finding a physician to administer a dose when I am on vacation. I will call them in the morning.
Meanwhile, I am getting steamed...on a "This just is not fair" temper tantrum. After 6 years and tons of treatments, I have become pretty at ease with the diagnosis. I actually forget that it is serious because everything is routine. I have learned to be at ease at a count of 20. BUT, every now and then it just is a bother keeping well and all that.
I am unable to take Promacta because the cost for me would be huge, about 3 to 4 thousand more than nplate. I am not eligible for either programs financial assistance...just above the window of assistance.
Okay, that's my theraputic rant and rave. All sympathy is welcome....
A warm hello to all those who have been with me on this journey.
Jean

I have actually received information from the makers of Nplate providing a number to call and they will help you find someone who would be able to give you Nplate while you are away from home. I know that it is frustrating. I am on Nplate myself right now. The weekly doctor visits can be a pain but at least I have a wonderful hematologist and the staff at the clinic are like family to me. Nplate can in fact be changed on your doseage days. It is ideally given every 7 days but I have gone as few as 5 days and as many as 14 days.

So here is what happened. When I contacted N-plate helpline they said they could help find a provider in the area where I would be vacationing...but...the provider would need to do a whole intake exam...and that would entail having an appointment in advance. My hospital could have made the same kind of arrangement. Either way, the process requires significant advance notice. My hospital is unwilling to give the n-plate serum to a patient. It also requires refrigeration. This is a bummer, esp if you are spontaneous. I still can't figure out what this means if I have a family emergency in another state. Unfortunately, because of costs and insurance limits, nplate is my only choice at this time. Promacta would be easier, but it is cost prohibitive for me...not able to get financial assistance from them.
Jean

What would happen if you just didn't show up for the injection? Call in sick and go when you get back?

I like your idea Sandi.
Erica

Oh my, I don't think missing a dose is wise with n-plate. I am not sure what the "window" of risk is, but I do know that if a person stops nplate the platelets fall below the level where nplate was started. With me, that would be 15. Doc suggests two day after at the most. Kind of scarey. I asked what would happen if we had a weather disaster. No reply. Oh well, "keep calm, carry on".
Jean

Jef - I wouldn't say to go a whole week without it, but if you get injections on Fridays, you could leave Friday after the injection and come back the following Sunday, get the next injection on Monday. That's a few days late, but you get some vacation time.

Seriously, what would happen if you had the flu and couldn't go? I'm sure there are circumstances like that all the time.

Sandy, - that does sound reasonable. There's always going to be the possibility of something coming up and not being able to get your shot. Eventually, I think N-Plate is hoping for patients to be able to give it at home--at least that's what I heard.

And....there have been patients who had to skip their weekly shot because counts were high enough that they didn't have to get one. Jef, do you get a count before every injection? If so, what are they usually?

Hi again, We are maintaining a fairly low dose of 200 per week. My counts only range from 20 to 30 with nothing predictable in true ITP fashion....nothing but fashionable.
I am now only being tested every other week, but if I drop close to 20 I test the next week to be sure I am not in a tumble.
I started out at 150 dose, but we raised it this fall because it was hanging in the low 20's.

I am not looking forward to home injections. If that happens I may switch to Promacta. The cost of both medications is huge for my medicare supplemental plan. Neither drug is covered on the 3 tier level and the out of pocket cost is huge. As long as the drug is administered in the hospital infusion room it comes out of my doctor allowance and I meet the ceiling of my payments within the first two months. It is a savings of about $4000 a year compared with Promacta, or what I would have to pay for N-Plate out of pocket. For those of us who have income on the margin of financial aid, having the drug administered through the hospital can be a small inconvenience as compared to a financial burden.

Thanks for your responses.

Jean

Jean,
I completely agree with you regarding the medicare cost. I am just know enrolling in medicare, and all I can say is that it is a real eye opener! Most of the more expensive ITP drugs are all in the Tier 5 category. So, you are right, unless you get them in the hospital, the drug plan doesn't cover that much of it. You also need to be careful about weather you are actually in the hospital or in there as an "out patient".

I just feel I am not going to go "broke" over any treatment plan in my future. I just wonder how Promacta, Rituxan, and N-Plate is going to deal with all these costs for seniors in the future.

Hopefully, they won't start giving N-Plate at home any time soon.

Dee Dee