My son was recently approved to receive NPlate at home. He has been going to our local hospital's infusion center to receive it for the past 7 months - not ideal, but the results are promising enough to try and continue treatment for awhile longer, especially with the added convenience of at-home injections.
He is the only child in our community receiving NPlate and we will be the first in our state administering at home. I know.
Basically, I'm just looking for some support so that I can feel comfortable administering the med. My biggest concern is preparing the dose correctly. He is currently receiving 9mcg/kg per week. Any experiences would be appreciated.
Hi kulifeld. That is great about your son being able to receive nplate at home. I wish it was more widely accepted in the US.
I've self-injected a few times at home and a few times in the infusion center while being trained. It's not difficult, though it is a bit nerve racking at first. It really is so much easier than going to the infusion center. I'm sure you will soon be a pro.
If you have any specific questions or just want someone to empathize with you, let me know.
Hi b2h -
Thanks so much for your response. Hopefully this will become more common - especially as patients spread the word that it's a possibility. Heading to the infusion center every week for the injection has been a cumbersome experience and more than once has stopped my son from being able to travel or do something else he needed or wanted to do!
My main question is how did you set up your training? Our doctors here are very willing, but honestly very inexperienced in regards to actually preparing the dosage, which is my main concern. They weren't even sure how the med would arrive and what would come with it, etc. In my research online, I found a training pamphlet written by the drug company that implies there's some sort of training package, but none of his docs have seen it before.
Long story short, what was your training process like?
Thank you again,
Diagnosed with ITP in 2007. Had other autoimmune conditions for 24 years. Treatments - prednisone repeatedly, Imuran, splenectomy, 3 courses of Rituxan, Eltrombopag (Revolade/Promacta) and now trying NPlate. Newly diagnosed with LGL Leukemia.
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I have just started gifting myself the NPlate injection at home. I went for 4 weeks to my GPs office and the nurse trained me on how to mix and self inject.
I have taken notes and could share offlist. The problem is I keep getting error messages when I try to send a private message on this site even when signed in.
Your pharmacy will be able to help too.
Notes - there is the dosage provided in mcg but the amount you inject is prescribed in ml.
Also NPlate does not come with sterile water, so you will need access to sterile water vials and of course the needles and syringes.
Ensure all of th powder is dissolved before drawing up dose. Swirl do not shake to mix.
Also important to keep the NPLate refrigerated before mixing, between 2-5 degrees Celsius.
I found the most nerve racking part was mixing the dose and drawing up the correct amount to inject. The injection itself was not difficult.
It has been 4 weeks of self injection and it is starting to feel second nature. So much more convenient.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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I had to do Methotrexate injections at home. A nurse showed me how to do it in the office but by the time I got home, I'd forgotten everything that she said. I know it's different than N-Plate...I didn't have to mix anything, but I ended up YouTubing it and learned from that. Once you get the hang of it, injections aren't that hard. I have had to inject my mom's cat and daughter's dog, both diabetic.
If you get stuck, ask a knowledgeable nurse. They should be able to help you. I'm glad they are finally allowing this!
Thanks so much for your reply, bannfam. I'm hopeful that we'll get the help we need with preparing the dose correctly at my son's doctor's office. Unfortunately, the pharmacy is all by mail (we live in a fairly rural area with no nearby specialty pharmacies that will handle NPlate). It's really good to know there's someone else out there to ask if I get stuck! I sent you a private message, if you're able to access it. Thanks again.
Hello this is very interesting! I would also like to inject Nplate at home but doubt my hemo would allow it. What state are you in? And is this a special circumstance because you are rural? On the Nplate/Amgen website it states a patient cannot inject Nplate themselves, it must be done in a doctors office. Those are rules for the USA, I know they self-inject in Great Britain and other countries. I'm in California and am close to my cancer clinic where I get my Nplate every week. Its not too much trouble, takes 1-2 hours but would be so convenient to inject at home. thanks for the info!
Hello Poseymint! No, it's not a special circumstance. We live in Maine. In December Amgen approved NPlate for at-home injection for pediatrics. Prior to that our insurance company was pushing us to try for at-home injection (which wasn't allowed for children at that point). To be clear, it is allowed. It may take some work on your doctor's part, but it's definitely possible. I would suggest starting with the pharmaceutical rep. for NPlate that visits your doctors' office (or ask your doc or their nurse to reach out to the rep.) - they have the most up-to-date information and can be very helpful in making it happen.
It sounds like your son goes to his doctor’s office and the nurse administers the drug which the pharmacist has already prepared. Is that correct? If so, you will need to make an appt with the pharmacist and the administering nurse(s).
Let them know you need training and have them notify the pharmacist to not prepare the injection on the days your son will be there for treatment.
When you are there for treatment have the pharmacist show you the entire procedure (supplies needed, cleaning the vials, adding the saline etc) and if you want have them explain the math to you or just write down the amounts you will need. Then, perhaps the next time or time after you can do the prep and administer the drug while the pharmacist and nurse watch.
Take your time, take notes if you want and train as many times as you need. They most likely will give you a print out of how to do a basic sub q (subcutaneous).
I don’t know which specialty pharmacy you are going through, but when you order the nplate make sure they are including the needles, barrels, saline, alcohol wipes and biohazard container (for used needles). There is not additional charge for these items, but sometimes they won’t include them unless it has been requested.
Your doctor’s office may want to wait until you have the nplate and other stuff from the pharmacy and have you bring it all in for them to see. However, you can tell them that what you will have is exactly what the pharmacist has.
- box with vial of nplate inside
- saline vial
- needles and barrels
- alcohol wipes
- biohazard container
- you will have to supply your own gloves, paper towels (to put items on and/or for bleeding after injection), gauze and/or bandaids
As bannfam wrote, nplate needs to be kept in the fridge, same as insulin. If your son is traveling, an insulin travel case should work. Since the nplate needs to be kept at a cool temp. it will be packaged in a cooler. However, it will only stay cool for about 36 hours. So, if you know that you won’t be able to pick it up from your home or the post office within 36 hours from it leaving the specialty pharmacy, ask to have it sent to a pharmacy instead. They will do so and the pharmacy will keep it cool for you and you can pick it up when convenient.
Hi Poseymint. Ask your hematologist to write a travel prescription for you. That is what I did. It is however, outrageously expensive.
I would really like to self-inject all the time, but cost is an issue and I have come to realize that having the labs and injection regularly is helpful right now for my care.
Diagnosed in 2014. I'm also a renal specialist nurse
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Over here in the UK it all comes as a kit including everything that is required except the sharps box. There is also a very detailed information leaflet with pictures showing how to prepare everything. If hands are washed properly prior to commencing the procedure there is no need for gloves.
While I can fully appreciate how convenient NPlate self-injection would be for most people, I hope it never becomes the standard protocol in the US. It would then be classified as a specialty drug instead of a medical treatment, which means Medicare and my supplemental insurance would no longer cover 100% of the cost. If I had to take it as a specialty drug, the co-pay would likely be too high to afford. Manufacturers don't offer cost assistance programs for Medicare enrollees.
Besides, because my counts are still volatile, so I need a platelet count before each injection. That necessitates a weekly trip to the MD's office anyway. Might as well get a free shot then instead of paying for it at home after the count.
I do hope everything goes well with it for you and your son, kulifeld! I'm sure you can handle the procedure with good training. I've done amateur nursing duty for my husband several times, and it surprised me what I could manage to learn when called on.
Thank you everyone for your thoughtful, helpful replies. It's wonderful to be able to connect in this way. This is year 8 since my son's diagnosis and he's been through pretty much every standard treatment save splenectomy - some with greater success than others, of course - and I'm still amazed at the fact that he has to rethink and retry and be open to everything when a previously successful treatment loses its efficacy.
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