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How do you travel on Nplate?

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14 years 1 month ago #18067 by mngrrrl
How do you travel on Nplate? was created by mngrrrl
Hi - my hema just recommended Nplate yesterday. Don't know yet if my HMO will cover it, but they're 'researching' it. Aside from the cost, I'm worried about being tied to my hema's office. I read that through the NEXUS program, the drug manufacturer can hook you up with a registered physician away from home. Has anyone done that? Do you need advance approval from your insurance carrier? Is it considered out-of-network and therefore billable to the patient?

I'm still bummed that my splenectomy appears to have failed. No more Rituxan for me after the black-box warning came out - no thank you! IViG works but only very short-term. Pred and Dex work, but the docs say I shouldn't have any more of them. So. My hema says Nplate is next. It scares me to be tied to that weekly shot. Anyone have comments?
14 years 2 weeks ago #18474 by
Replied by on topic Re: How do you travel on Nplate?

It scares me to be tied to that weekly shot. Anyone have comments?

Promacta (the other newer ITP treatment).
Designed for the same purpose as Nplate, but it is in tablet form (comes in 25mg pills for dosages of 25, 50, and 75).
Like any other ITP treatment, it may or may not work for you. I can only say that it has worked for me over the past nearly two years. ;)
Note: It isn't any cheaper than Nplate though; my initial 75mg dose ran about $8,000 a month. I'm on 50mg dose now at a little over $6,000 for 30 days. Insurance picks up all but a $60 co-pay.
.
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14 years 2 weeks ago - 14 years 2 weeks ago #18479 by Tad Moody
Replied by Tad Moody on topic Re: How do you travel on Nplate?
The longest my hema let me go between Nplate injections is 10 days, so I would get an injection on a Friday, travel for the week, then get an injection Monday. However, my dosage and platelet count had to be well established and stable for 2 to 3 months before he let me try that.

As a precaution, I also bring prednisone with me when I travel just in case I can't get home.
The following user(s) said Thank You: mngrrrl
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14 years 2 weeks ago #18480 by Rhiannon
Replied by Rhiannon on topic Re: How do you travel on Nplate?
Where are you planning on travelling to? I ask because I don't know but it may be an option that you can agree with your heamo to receive the treatment at another hospital to where you will be at that day? Obviously they would have to negotiate it all and know exactly you will be and a day out of travelling possibly better than no travelling at all. I have no idea if this is possible to arrange but if you don't ask then you will never get is my philosphy. Naturally there is a way of asking and one should never assume it be granted. But may be they can work something out with you? Its just an idea for you to think about.
The following user(s) said Thank You: mngrrrl
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14 years 2 weeks ago #18489 by mngrrrl
Replied by mngrrrl on topic Re: How do you travel on Nplate?
Well, good news - my hema advises that they can also give me IVIg before I leave, and that will hold me for 2-3 weeks. I had the misconception that once I was on Nplate I had to stay on Nplate and only Nplate. I appreciate all your comments.

Most often things aren't as bad as they first seem, eh?

Funny - my boss was just put on Plavix because he has too many of the little buggers. I think he should transfuse each other and maybe cure the both of us!
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14 years 2 weeks ago #18494 by Rhiannon
Replied by Rhiannon on topic Re: How do you travel on Nplate?
good news about you being able to travel. yes though i find it is often better to expect the worst then it is easy. Think it is going to be easy and it really isn't..... Enjoy the holidays :-)
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8 years 5 months ago - 8 years 5 months ago #58958 by Lauralu
Replied by Lauralu on topic Re: How do you travel on Nplate?
I know this is an old post, but I am facing the same situation (traveling but need weekly nplate). I am wondering how it worked out getting the ivig for your trip? Is that what you've continued to do?
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8 years 5 months ago #58962 by Margaret k
Replied by Margaret k on topic Re: How do you travel on Nplate?
To be able to travel to Dubrovnik from Edinburgh I learned to self inject from the nurses at my haema clinic. I carried the Nplate from home to the airport ( 2hr drive) in a battery cool box in the car, transferred it to a cool bag with ice in it and the cabin staff in the plane(easy jet) were kind enough to put this in their fridge. I had asked about this beforehand but had not got a definitive answer but on the day they were very obliging.The flight was about 2.5 hrs so the bag made it to our rental apartment fridge quite cool. Not that it was worth the effort-I was just above a count of 20 to go and on my return I had fallen to 13 so I am afraid it was soon goodbye to Nplate. To cope with longer journey times I guess you would need the guarantee of access to a fridge.
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