Started NPlate Today

Got my first shot of NPlate this morning after waiting a couple weeks going through the insurance approval process, etc. So far, no adverse reactions. Got a CBC scheduled for the end of this week to check the count - last one I had put me at six, so I'm hopefully I see an improvement over the next couple weeks. Let's see what fate has in store for me!

I'm an NPlate newbie, too.

My experience hasn't been hiccup free, but I guess it takes time to get it right.
My fifth dose will be tomorrow. Counts from the day of the first dose to the fourth one: 15, 60, 345 (dose lowered by 50%), 115.
Today, I have the worst bleeding signs I've ever had. I would assume by that I'm around 0 now... But I've been wrong many times when trying to judge by signs alone.

Good luck to us both!

Janet:

How have the side effects been for you? I haven't been hit by anything (yet). I'm cautiously optimistic.

Sorry to hear you're having some issues. Hopefully your counts haven't dropped that far.

Sometimes symptoms appear when counts drop fast, and it doesn't necessarily mean they are low. But then again, they could be.

It takes time to get stabilized on N-Plate, so good luck to both of you!

I'm getting ready to start mine next week. Im wondering about the cost. I know my insurance won't cover it 100%. Anyone know roughly how much each injection costs? I looked on the Nplate website and they have a program you can enroll in that helps with the out of pocket costs. It's not income based. It almost sounds too good to be true--there has to be a catch??

Side effects? Nothing dramatic. Diarrhea and paresthesia are listed in the prescribing info. I've been having mild diarrhea, something that is unusual for me that has come about since starting the med; it seems to improve as I get closer to my next shot.
And within the past week, I've noticed the tip of my left pinky finger has been numb. Within the past 2 days, the tip of the finger next to it seems numb. This is coincidentally or not, on the same side as I received all the shots.
I can't attribute either condition definitely to the med, but it's something to consider.
Otherwise, nothing. No headache, no insomnia... None of the most common side effects the prescribing info warns about.

Snorkel, I haven't received a bill or an EOB yet. I have discovered by searching online the wholesale price of the drug. The average wholesale price of the 250 mcg vial is $1275. The 500 mcg vial's AWP is $2550. That means the retail price an insurer is charged by the MD must surely be more. I may be mistaken, but as I understand it, there is no preservative in the vials, so any remaining med beyond the needed dose (40-80 mcgs for me, so far) might have to be discarded. Seems an incredible, shameless waste, so I really hope I am mistaken.
I'm blessed to have an out-of-pocket drug cost of only $500 per year. It didn't make a lot of sense for me to apply for Amgen's program for this year, if they'd even accept me in the first place. The nurse seemed to think I'd be denied for having such a low OOP basis. And next year, I'll be on Medicare after April 1, which would exclude me from their program for that reason.
If I were you, I'd definitely apply.

Count today is a whopping 1. My record low.
Today's dose was increased back to the full starting dose of 80 mcg.
Clearly, it's a process.

Feeling anything yet, Matthew?

Nope, not feeling anything yet - bad or good. Got an appointment for a CBC tomorrow morning. It will probably be Monday by the time I get that back.

Wow, Janet - you hit the jackpot. That's the problem with that drug...counts can drop pretty low. The good thing is that most people do stabilize in time. I hope it happens soon for you.

Got my latest counts back yesterday - still at 6, the same number I had before starting. Not surprising since I got the CBC just a couple days after the first shot. Second shot it tomorrow afternoon, next CBC will probably be Friday.

Still no side effects from the NPlate, thankfully. Most of my minor symptoms seem better despite my low count. Don't have much in the way of petechia, a couple bruises that seem to heal faster than they used to six to eight weeks ago, no blood blisters in the mouth in recent weeks, and very little bleeding from the gums.

Speaking of bleeding gums...I recently found a very soft toothbrush that seems to help:
GUM Post Surgical Toothbrush
www.gumbrand.com/toothbrushes/specialty-toothbrushes/post-surgical-toothbrush-317mb.html
(not an endorsement, by any means)

Toothpastes can make a difference too. Some of them are abrasive, especially the ones with baking soda. I've had bleeding gums from it even with normal counts.

Sandi wrote: Toothpastes can make a difference too. Some of them are abrasive, especially the ones with baking soda. I've had bleeding gums from it even with normal counts.

Makes complete sense and I hadn't thought about that - just so happens that's what I've been using. May have to search to see if there's a more 'gentle' toothpaste to use with the new softer brush I have.

I bet a child's formula toothpaste wouldn't be as abrasive. Little kids don't get coffee and wine stains that need to be scrubbed off.

Were you given the suggested starting dose of 1 mcg/kg? I wonder if your dose tomorrow will be increased, given how you didn't get any rise from the first one.

After my count of 1 and an 80 mcg shot on Wednesday, count was 3 on Friday and 100 on Monday. It seems I'm very responsive to the drug. The hard part will definitely be finding the precise dose.

Sounds like your doctor is using a different approach than mine. I get my CBC immediately prior to each shot (which is read in the office, not sent out). He uses that count to determine the dose for that day.

I have my fingers crossed for you that you'll get a response soon!

Janet:

I got the max dosage because of my weight: 10mg.

Oddly enough my insurance won't cover outpatient blood tests at my hematogist's hospital, so I use an independent lab - which is more convenient in terms of being close to my office, but obviously the results take a while to get processed.

Believe me, I'm hoping I get a good response soon!

I wish you continued luck with your shots, as well!

On the topic of toothpastes:
Surprisingly, baking soda has the lowest abrasive index of any toothpaste.
This may have more to do with how they affect your teeth than how they make your gums bleed, but here is the data:
dendds.com/uploads/RDA_index.pdf
Toothpaste: RDA Value
Straight Baking Soda 7
Arm & Hammer Tooth Powder 8
Arm & Hammer Dental Care 35
Oxyfresh* 45
Tom’s of Maine Sensitive 49
Arm & Hammer Peroxicare 49
Rembrandt Original 53
CloSYS 53
Tom’s of Maine Children 57
Colgate Regular* 68
Colgate Total 70
Sensodyne* 79
Aim 80
Colgate Sensitive Max Strength 83
Aquafresh Sensitive 91
Tom’s of Maine Regular 93
Crest Regular* 95
Mentadent 103
Sensodyne Extra Whitening 104
Colgate Platinum 106
Crest Sensitivity 107
Colgate Herbal 110
Aquafresh Whitening 113
Arm & Hammer Tarter Control 117
Arm & Hammer Advanced White Gel 117
Close-Up with Baking Soda 120
Colgate Whitening 124
Ultra Brite 130
Crest MultiCare Whitening 144
Colgate Baking Soda Whitening 145
Pepsodent 150
Colgate Tarter Control 165
FDA Recommended Limit 200
ADA Recommended Limit 250

Wow, I don't get that at all. I've used straight baking soda and toothpastes that have it, and those are what cause my gums to bleed. I can feel the grittiness of it.

Went in for my third shot this morning. Surprise, surprise...my latest count (from Monday) is 57! What a sense of relief to finally have a treatment work. Hopefully the number will hold. Still at max dosage for the shot I got today. Will get another CBC this coming Monday to see where I'm at before the next shot.

That is fantastic! I'm happy for you!

I'm happy for you, too!

Got another shot today, staying at same dose. Count from Monday: 92.

Woo Hoo! That is great!