BIG Goof-Up

I was doing so well on NPlate. Have been on the same lowish dose for a long time, waiting to get off prednisone before lowering the NPlate. Counts have been higher than desirable, but everything in good time, right?

So, 3 weeks ago, count was 240
The office was to be closed the whole next week for vacation. At first, arrangements were to be made for me to get my shot at the hospital. But then it was deemed that, since my count was so high the week before, I could safely skip the vacation week's shot.

Last week, count was 502, so that shot was skipped, too.

Someone here said that, in their experience, the full effect of NPlate is seen after two weeks. Well, that may be entirely right. Two days ago, my nose started heavily oozing and petechiae started showing up. By the end of that day, I had mouth blisters, the corner of my lip split and wouldn't stop bleeding, and heavy petechiae head to toe. It was the very worst bleeding I've had in the 6 years since diagnosis. By the time it got that bad, I knew the office would be closed, so I went as usual on Tuesday. Count was 2.

I was given a Solu-medrol IV and the usual dose of NPlate. Supposed to go for a count tomorrow. Today, I'm seeing more bruises and petechiae replacing the older spots. Nose has slowed down but not stopped. No new mouth blisters. But I look like I've been through the wringer.

I am livid. Somewhat at the doctor, somewhat at myself. I think this is happening because of that first missed shot. I KNEW not to skip a shot, ever. (Except with a 502 count, of course.)
There's a reason why the manufacturer has a program to arrange a shot for people who are traveling.

Am I right? Or only maybe right?

Yes that was my experience. When I graphed my NPlate dosages against my platelet levels there was a distinct pattern in that the peaks and troughs of my platelets was similar to the change in the NPlate doses given 2 weeks earlier. My weekly cycle went 250 (dosed), 400 (no dose), 600 (no dose), then 400 (no dose), 250 (no dose), 150 (dosed), 250 (dosed), 400 (no dose), etc, etc. Apart from one overdose which took me to 1,036 and the next week to 1,084 despite not having a dose, this went on for a couple of cycles and then it just suddenly stopped. I had been doing my usual 400, 250, 150 drop when one time we decided not to re-dose at 150 and see what happened. The next week I had expect a count of less than 50 but to my surprise my result was 195 and then never dropped below 200 again.

I remain at 200+ today some 6 months later (fingers crossed) and am still mystified as to why it started, why I was resistant to everything (and I mean everything until NPlate) and then why it just suddenly stopped. I read your story and many others whose symptoms and treatments just go on and on and feel for you as my memories of the nose bleeds, blood blisters, petechiae along with the side effects of the various treatments are still very fresh in my mind.

Janet:

Hopefully you can get back on track and it won't take too long. Now that you know what can happen when you skip two doses, you can avoid that situation from here on.