3 yrs on NPlate, now a sudden platelet drop

A brief background: My husband has been on NPlate for a little over 3 years. He is 78 yrs old, has had ITP for 28 years, first diagnosed through blood work done when he became diabetic. He had a splenectomy the first year after high doses of prednisone couldn't be continued. Through the following 28 years his platelets gradually fell. During that time he had several IVIG treatments which gave him only a temporary boost.

He has been having increasingly bad side effects from the NPlate; headaches and dizziness are the worst, but he has experienced all of the listed side effects. They had been trying to decrease his dosage in hopes he would feel better. He had been getting 100 to 150 units of NPlate each week and his count was maintaining between 40 and 100. When he went for his NPlate shot today, his count had dropped to 11, a week ago it was over 50. He had no bruising or any indication of such a dramatic drop. (He never has had the bruising or peticiae even when he was first diagnosed) He was given 200 units of NPlate today and will check back in on Thurs. to see what his count is.

Has anyone experienced a drop like this after long term NPlate treatment? We're wondering what the next possible treatment can be.

If you lower the dose then you are likely to get lower counts so that's not going to signify a problem. Don't worry if his count hasn't gone up by Thursday as it can take 4 or 5 days to work.

Ann, To be clear, he has been on lower dose for more than a year, trying to alleviate the Nplate side effects, and has maintained just fine. They have wanted to keep him above 30 since he's never had the ITP physical symptoms. This low count is definitely a sudden change.

Maybe he has had some sort of virus? I had a drop in my count recently and it went back up - my doctor said the other indicators on my blood count (some of the white cell items) suggested that I had recently gotten over a virus. I hadn't felt sick.
Erica

Sorry I misunderstood. But it seems that anything is normal with Nplate. I've been on it for over two years and the same has happened to me from time to time.

Update: My husband went to have a count today and his platelets have dropped even more, down to 4,000. They have prescribed prednisone, 3 20mg pills a day for five days and then they'll check his count again on Mon. which is his regular Nplate treatment day.

We called the Nplate patient support line and were transferred over to an Amgen pharmacist who took all his info and will enter a report. He asked if we knew about loss of response (we didn't), and he suggested we ask the MD to contact Amgen for antibody testing to see if my husband has neutralizing antibodies. He still has no bruising or other ITP physical symptoms. He didn't even bleed after they did the blood test.

I hope he can tolerate the prednisone; he was miserable with the Nplate side effects, but I know he can't stay on prednisone for long.

750 units of nplate thats my dose as of 15/03/12 after being more than okay on 250 for 6 months peaking at 265 im planning on starting insanity training on monday 19th january 60days of hard core cardio with a count of 10

Another update: After 4 days of prednisone (60 mg per day) my husband's count was close to 500,000. WOW! So they didn't give him any more Nplate and stopped the prednisone and he'll be checked on Thurs. I wonder how far down his count will go by then. In 28 years of ITP, he's never had such fluctuations.

Thanks for sharing this - I have just embarked on my journey with N-Plate and am keen to learn of others' experiences with it. My first count is next week.

Nplate is an up and down experience so don't worry if you don't get total stability on it. I was on it in a trial in London for a while and just carried on with it after the trial ended. I'm now self injecting and getting a blood test every eight weeks. It's a good treatment for me with no side effects.

Today my husband's count was 358,000 so it dropped some, but he has only been off the prednisone for a couple days. He did not get Nplate this week so we'll see what it is on Monday.

Four days later and the count has dropped to about 160,000. He has taken no more prednisone for a week. Because his count is dropping, they gave him 160 units of Nplate today. I don't understand why they gave it again when he suddendly lost response to Nplate a couple of weeks ago. He did question it, but they felt he needed it. We're losing confidence that they know what they're doing. Still no word from Amgen on the antibody testing either. My husband feels really awful physically and is getting very depressed.

Wife, if your husbands' count is 160k, he is in the normal range. He didn't need any kind of treatment. I think you need a new doctor, or at least a second opinion! Just my humble opinion.

If you're on Nplate though it is usual to resume use once the count has fallen below a certain number, (150 in the UK, maybe 250 in the US.

The Nplate leaflet which I have been reading today does say that if the patients stops responding to Nplate further investigation should be made. Probably a bone marrow biopsy and look for myelodysplasia and so on.

im now on 1000 of nplate as of yesterday with a count of 5 and thats the maximum dose allowed for me i hope something happens or i think spleenectomy is on the cards for me.Ive been on n-plate for just under a year and as ive said before had a great response for the first 6-7months at counts of 150-170 with the same dose 250 then its been up and mostly down with increased dose lasting 2 weeks at about 50-60 and then down to 5-10 before another increase and now im at the max. Anyone got any thoughts on another step apart from spleenectomy . Ive had ivig,prednisilone,promataca with no response and doctor seems not keen for rituxin/rituximab ,ive had bone marrow biopsy and other tests not usually needed for itp just to rule out as much as possible the doctor is as sure as he can be its primary itp .Anyway off to disneyland paris with my wife and two of my 3 girls ,the oldest one is away skiing in america again with the school so i wont need to worry about itp for at least a week MR Micheal Mouse will make sure of that

JPB - ask the doctor what he will suggest if splenectomy doesn't work. If he says Rituxan, see if you can try that first. Have you tried Imuran or CellCept?

My husband's count is gradually falling, but it's over 100,000 and they're still giving him 189 units of Nplate. He hasn't had any more prednisone. Amgen has authorized some tests to see why he's been losing the response to Nplate. That large a dose of Nplate makes him miserable with headache and dizziness. He says he's going to tell them he doesn't want that large a dose, but we'll see if he'll follow through by next week when he goes for his shot.

His count is still drifting down; now it's less than 100,000. He got the same 189 dose so he'll have a bad few days. Amgen has gotten the paper work for the anti-body testing, but no work from them yet.

What does the doctor say about continuing when he's getting no response? Did you ask what their thinking is?

He hasn't actually seen the doctor yet. He usually sees the assistant. I think their feeling is that they're just trying to keep him high as long as possible. Before the dramatic drop last month, he was between 50 to 100 on a lower dose of Nplate. He got that huge bump from just 4 days of prednisone.

He's scheduled to see the doctor in about 2 weeks and hopes to hear about the test from Amgen before that.

My husband's count has been slowly falling for the past three weeks. It's now down to 55,000. They cut his N-Plate to 100 units because he has been having extreme headaches and dizziness. The cut back has helped with the side effects somewhat, but not entirely. We have not heard back from Amgen on the blood testing they were going to do.

Now the MD wants to try the Dexamethasone regimen because he had such a good response to prednisone a couple of months ago. I think it's a four day dose at first. I'm afraid he might have a bad reaction to it. Another problem is that he's also a diabetic on insulin and it will shoot his blood sugar way high. His primary MD wouldn't agree to it unless he sees an endocrinologist. My husband refuses to see the endo doc he had been seeing so we're waiting to hear from another one.

Does anyone have any thoughts about the Dexa treatment?

Maybe you could line up the next treatment but wait until his counts get lower - 50k is ok for most people unless he has problems that make it not ok. Maybe his counts won't get lower.
Erica

Maybe you could line up the next treatment but wait until his counts get lower - 50k is ok for most people unless he has problems that make it not ok. Maybe his counts won't get lower.
Erica

Around 55 is an ideal count for Nplate. Maybe with the lower dose he'll stay around about there. Are they aiming for a higher count which is not the idea with Nplate?

The problem is he suddenly totally bottomed out a couple of months ago. The story is at the beginning of this thread. The docs are OK with him being as low as 30,000, but the trend down is concerning them. The NPlate is having a bad effect on my husband: severe headaches and dizziness. It has been gradually getting worse and even the lesser dose still has the side effects. He has been on it for about 3 years, I think. We don't know if it's having a cumulative effect.

The idea with the Dexamethasone treatment is to see if they can get him off of NPlate and maybe get him in a safe zone with no treatments. Even when his count is very low, he doesn't have any bruising or petechiae.

I can understand why the doctors would want his counts up due to your husband's age, but if he doesn't have any symptoms at low counts, it seems kind of cruel to keep giving him treatments that make his other issues worse.

I can understand what a juggling act this must be.

Thank you, Sandi. He's very frustrated and I think he got scared when he had the sudden drop a couple of months ago. The MD and his PA also don't seem willing to have him at a low level. He was getting down below 10.000 when NPlate became available and we thought it was great. Medicare pays for it and his supplemental picks up the 20%. Promacta would have cost us more because it would have to be under his prescription plan.

Personally, I'd like to have him go off the NPlate as long as he could and see if the side effects go away. There are a lot of issues, along with his diabetes, he also has had a quad by-pass in 2000 and he also has a pace maker. He had to be on IVIG for 5 days before his count got over 100,000 and they could then do the by-pass.

It seems like the Dexamethasone is pretty potent stuff, but he did tolerate the prednisone for the few days he had it a couple of months ago and when he first got ITP 28 years ago he was on a very high dose for a long time, trying to avoid the splenectomy. I think he took 100mg a day for several months. Of course, he was a lot younger then. Now we're both againg very fast over this!

Dex can be very hard on a person. I've never tried it, but have heard many stories. It might not be as bad if he doesn't have to go anywhere. Having to drive and work when you feel like that is impossible. If he can just rest, he might be okay. Maybe he could try 20 mg's instead of 40? He might respond to a lower dose.

Hi Wife- Just my 2 cents: sounds like you are clear that you want to at least take a break from NPlate.

I have been off and on Promacta for over a year. I opted to quit for a while because of side effects. Side effects went away, then I went back on it 4 mos later at a lower dose. now I'm taking another break from it.

I wonder if prednisone +NPlate brought his counts up to 500K and they didn't stay up, why do doctors think they will stay up with Dexa? I guess theres always a chance, but I wonder about that logic.

Doctors want to give a high dose of steroids, then a fast taper. That didn't work for me. I prefer a low dose and super-slow taper. What I'm doing now is a low dose of prednisone. I started at 10mg per day, and now am at 6-7mg and will stay there. For a while I added a low dose Promacta, 25mg. My goal is to have stable counts over 20K. I've been in the teens and below 10K and have been fine. I feel most safe above 20K, and prefer a low stable count over wild fluctuations.

I live with low platelet counts because I don't have much in the way of bleeding symptoms. Its a risk but the meds are risky too. I had to change hemos to find one that would listen to me and trust that I'm okay between 10K-30K.

There was an interesting article that Sandi posted about some people with ITP having platelets that are more "activated" than normal platelets. Those people may be the ones who have very few bleeding symptoms even at low numbers. The activated platelets are on high-alert, ready for action, and from what I understand, are doing the job even though theres not as many of them. I will link the thread if you are interested. I loved reading that because I believe I fall into the "activated platelets" group and it gave me even more confidence that I am okay at low numbers.

Just sharing my experience, whatever you do I hope it works! best of luck

Thanks Sandi and poseymint. Evidently there's some thought that the Dex treatment can knock out ITP in some people. I watched the video spotlighted on the PDSA home page and the speaker mentions a case with someone who did not respond to anything else.

Sandi, they are thinking he might not need the 40mg dose and at least he doesn't have to go to work any more since he's retired.

I have an acquaintance here whose husband has less than 10,000 count and has refused all treatment for almost 10 years. He's still working, traveling and according to her is doing well, but he does have some bruising.