Wife with ITP, splenectomy yesterday

I thought an update on her might be worthwhile.

She was discharged from the hospital Friday night. She also received 2nd Nplate injection Friday night. It left no mark or bruise. The first Nplate injection left an enormous bruise, so we were delighted with the way the 2nd dose went.

By Saturday morning the urine was back to normal-- no visible trace of blood.
Ulcers in her mouth have gone away.

Her attitude is great.

Thanks again to everyone for all the feedback.

Not everyone has an increase in count on the lowest dose, especially people with no spleen. The idea is to increase the dose each week until an effect is seen. It may take time.

They did increase the dose this time didn't they?

Good news! I hope her counts show a response! Let us know.

It is a very good sign that her symptoms have improved. Glad she is keeping up a great attitude, that always helps me.

Great news! Best wishes for continued improvement!

Jeffrey

Her count today is still 4, but something great happened today!

We went for a visit with her new hematologist, Dr. Rakesh Mehta @ IU Health. This guy is incredible!

Imagine the odds-- he himself has ITP and recently had a count of 4. Like my wife, he had an unsuccessful splenectomy about a month ago and is also treating himself with Nplate!

He told us that he started Nplate with a dose of 300 and had no change, then did 500 and had no change. When he went to a dose of 750 his count a week later was 1.7 million!!

This guy was detailed, open to questions, took his time and had a great demeanor. He spent about an hour with us and we have complete confidence in this move. We talked about tpo testing and his answer was great. Asked about h.pylori and his answer was great. Loved this guy!

Wife is now feeling really encouraged. She gets next Nplate injection Friday a.m. and the dose will be 500.

Also, while we were in the waiting lounge we came up with:

(I)t
(T)akes
(P)atience

I'm glad you found someone that you have confidence in. Here is some information about N-Plate dosing that you might find useful and important.

www.nplatehcp.com/nplate/about-nplate/dosing-and-administration.html

1.7 million is a dangerously high platelet count.

Sandi wrote: I'm glad you found someone that you have confidence in. Here is some information about N-Plate dosing that you might find useful and important.

www.nplatehcp.com/nplate/about-nplate/dosing-and-administration.html

1.7 million is a dangerously high platelet count.

Sandi-- He told us he actually went even higher the following week to 2.1 million and had to start treating with aspirin.

Nonetheless, it was inspiring to my wife to be talking to someone who had the exact same problem and very recently.

Greetings, all. And happy holidays.

I thought an update in order.

The wife has been receiving her Nplate for 4 weeks now. Last Friday her count was 7,000 and they increased the Nplate dose from 500mcg to 600mcg.

Today we visited Dr. Mehta and the count had gone from 7,000 to 457,000!! So, clearly 600 was the magic number.

457k actually puts her a smidgen past the high end of the desirable range, so she didn't receive a dose today. However, it isn't dangerously high.

We know that without a dose today there is a very good chance that her count will drop back down by this time next week. In fact, we know it is likely and may even crash all the way back down. Our excitement is not assuaged by that, however, because we now at least know that Nplate is effective for her and that she has, for the time being, a treatment option.

Life is good today.

I am very happy for you and especially for her!

Jeffrey

MCochran:

It's fantastic that she finally responded! Great news!

The goal with that drug though is to keep the count around 50k, so her count is too high. Hopefully, the doctor can get the dosage adjusted to keep her where she needs to be.

Sandi wrote: MCochran:

It's fantastic that she finally responded! Great news!

The goal with that drug though is to keep the count around 50k, so her count is too high. Hopefully, the doctor can get the dosage adjusted to keep her where she needs to be.

Sandi,

Yes, we know what the goal is with Nplate. However, her doctor is part of a research hospital and he and his group have some non-traditional ideas on what they think can be accomplished with the drug. Based on her age, weight, et cetera, her count is only slightly outside the high end of the desired range of 150-450. They're watching it closely in case it continues to climb. Please don't be concerned-- we're not "rose colored glasses" people who won't question what's going on. Thanks again! She's so glad to be above 10 and able to resume normal life activities!

Good for her! Hopefully with the start of the new year, things will be much better!

2 weeks ago she was 457k following a dose of 600 mcg the week before. So, no injection given.

1 week ago she was 107k and they decreased her dose from 600 to 400 mcg and gave an injection.

Yesterday her count was 1.2 mil and they had to instruct her to take aspirin to prevent clotting. Sheesh. So inexact.

Once that Nplate starts working, it REALLY starts working! So clearly they're going to let her immune system destroy these platelets and then adjust the dose down again until they get the dose low enough that her counts don't skyrocket.

That's what I did with Nplate too.. went up the doses, hit a high count although not as high as your wife's, and then went back down the doses to the minimum where I stayed for a couple of years. I'm now off it altogether still with a high enough count. It may happen the same for your wife, so there's plenty of hope that she will eventually get a remission. There have now been enough people go into remission on Nplate for them to know that it isn't just a coincidence.

1.7mil today. Still treating with aspirin.

A couple of days ago her count was down to 647k. Down a lot from 1.7mil.

Suspending Nplate now to see what happens without it. I previously alluded to her doctor having some non-traditional notions about the use of Nplate. His group believes that the immune response for platelet destruction may be "turned off" when the platelets get up extremely high like hers did. Basically, the immune system might reset itself back to default settings, if you will.

So we'll see. She feels good about things.

Well, I hope his group is part of a reputable research team and not some curious doctors using people as guinea pigs for their own self-serving theories.

I'm glad her counts are down! Keep us updated!

Wow! That high is pretty crazy! Did she have any symptoms? Mine were just over a million after a splenectomy last august but I had major symptoms- couldn't think strait and it felt like everything was in slow motion. I could feel how delayed everything was to hear something, make sense of it and return speech! Once I took ASA that went away within 30 minutes... Luckily no stroke! But did she have symptoms? That sounds scary high!I would have been worried!!

Hope they stay down! Like Sandi said, hope thus is appropriate treatment and not a mistake!

Yes, the Indiana University School of Medicine is highly reputable. I think this is an example of the pros and cons you get when you are seeing doctors from a research hospital. Its great that your doctors are on the forefront with new meds and studies, but you have to be willing to go along with treatment that may not follow the normally accepted guidelines. They definitely don't want her count that high and they weren't trying to get it that high. Nor would they, ever. In patients who *do* go that high, however, they believe there may be an effect of resetting the platelet destruction response of the immune system.

If she drops back down, they'll have her back on the Nplate.

Her only symptom with the high count was a terrible headache that lasted for about 8 hours. No other problems that she noticed. In fact, she drove herself to the appointment for that blood draw that read 1.7M.

Bloodwork a couple days ago, count at 445k. Last Nplate injection 4 weeks ago.

Just crossing fingers.

Much better!

Ohh that is awesome!

Hello all!

It has been quite some time since I have posted a message at this forum. I do drop in here from time to time, but haven't written in a while. Seemed like a good time to provide an update on my wife.

She had her last nPlate injection roughly 6 months ago. Her platelets have been hovering around 450k since that time. She is not having bloodwork done only once/month. She has been symptom free all this time.

We have noticed a couple of interesting things in the last 6 months. First, any scratch/scrape/cut she gets heals very slowly. It stops bleeding as you would expect and it heals completely, but quite slowly. Even very small lacerations. She also says that she is not affected by alcohol now. Pre-ITP, 2 or 3 beers would have given her a solid pop. Now, she feels no inebriation from alcohol at all. I wonder if this is common to others with ITP, others who've done nPlate or maybe others who've had their platelets get up near 2M like hers did.

Anyway, she is doing well at this time and we keep our fingers crossed at all times.

Steroids can cause slow healing and it can take a long time to get out of your system. That can explain that one. As for the alcohol, I can't think of any rational explanation for that, unless her metabolism has changed for some reason.

I'm glad she is doing so well - thanks for the update! It's great to see remissions occur in someone so newly diagnosed.

When I'm on prednisone my tolerance for alcohol which is usually 1/2 of one drink, increases to where I can drink 2 drinks without getting sick or stupid.
Erica