ITP back-- how quick does nplate work? (Updated)

ZOk, after a nice long remission of 12 years, my ITP came back with a vengeance 10 days ago

3/24-11,000. Admitted, given 40 mg prendisone and 2 doses ivig over 2 days
3/25-14,000, discharged


Monitoring counts, 40 mg prednisone daily
3/26--17,000
3/27--45,000
3/28--60,000

3/31--6,000 --admitted again. Started pulse decadron 40mg/day over 4 days. 1 dose ivig
4/1-10,000 discharged

4/2--17,000
4/3--11,000
4/4--3,000 250 first dose NPlate given 250 mcg
4/5--1,000 before same day platelet transfusion. Prednisone daily now at 80mg
(Update) 4/6--counts now at 7,000 after platelet transfusion on 4/5. Daily prednisone at 80mg
(Update) 4/7 counts now at 17,000. Daily prednisone at 80 mg
(Update) 4/8 counts now at 33,000. Daily prednisone at 80mg
(Update) 4/10 counts now at 231,000! Daily prednisone reduced to 40mg, nplate shot today cut to 100mcg

How quick does nplate take to work? Am concerned about ability to stabilize, move up as the ITP seems very aggressive this time. It is noteworthy this reoccurrence came on the heels of 12 years of good counts and just after having 2 serious successive stomach viruses and a mild flu over a 3 week stretch. Will keep posted.

I can't speak to the nPlate timeframe, but wonder if you would share if you are having bleeding symptoms. With swings like you've described, I'd be inclined to see where the platelets stabilize if you are not symptomatic. Also, what worked for you 12 years ago?

12 years ago I was given prednisone and ivig at 4,000 platelets upon hospital admission (lots of petichae) and a long prednisone taper upon discharge--several months low dose and i was 30 years old back then. I forget how my counts moved back then except I had a strong response to the ivig, which I do not appear to have this time.

This time, I noticed all of the petichae and, given it was a weekend, knew the ITP was back and counts were low. Even at 1,000, i am only seeing minimal bruising from IV ports and some blood in nose, but not an active nose bleed. Also, I am positive this was brought on by successive 4 viruses I just had--literally 2 colds and 2 intense stomach viruses over a 6 week period. It wiped me out and I never get stomach viruses. I feel recovered from the viruses for about the past 2 weeks, but it seems to have screwed up my immune system again.

From the way you are describing it, this does not sound like a crisis. It's possible your platelets will rebound as you feel better after the viruses. I, personally, might just wait it out, but only if I felt I had a doctor who knew a lot about ITP.

Update--had my platelet infusion on 4/5 (counts were 1,000 at the time) and today my counts were 7,000. Keeping in mind I just received my first nplate shot on 4/4, I am hoping tomorrow my counts are the same or slightly higher until we can stabilize the ITP and assess next options.

Curious--for those whom have received a platelet transfusion, how quickly did your counts drop as I would imagine your body simply removes them as quickly as it can via the antibody response?

I greatly appreciate the support on this forum.

I don't really understand the rationale for platelet transfusions when there aren't bleeding symptoms present. From what I've read, platelets are cleared from the system pretty quickly.

Here's some stuff to consider from an ITP expert:

www.insidermedicine.com/archives/VIDEO_If_I_Had_Recent_Onset_Nosebleeds_and_Easy_Bruising_Dr_David_J_Kuter_MD_PhD_Massachusetts_General_Hospital_3457.aspx

Nplate takes 4 or 5 days to work but it also takes time to get the right dose so the first dose may not do anything. I'd caution using two or more treatments at the same time, like Nplate and steroids, because you won't know which is the one that is working and especially with Nplate it's important to know what it's doing as you have to adjust the dose. The idea with Nplate is to get a count of 50 and not much higher.

I like Tamar's link. The thinking on ITP has changed in recent years and any doctor who hasn't kept up should be avoided. That tends to mean finding a doctor whose interest is ITP as all the rest will be too old fashioned.

Hi,

I had a platelet transfusion in the hospital-I was having bleeding symptoms and they were trying to give the prednisone time to kick in, my platelets were 4k and after the transfusion 17k the morning after and then back to 6k that afternoon. So I would say the count dropped within 24 hours of the transfusion.

Dru

Thanks for the quick replies. The Hema said it was likely that adding platelets would not do much, but simply didn't like 1,000 platelets--in light of such a rapid fall thru treatment (see initial post) and was hoping it would add just a little until nplate kicks in. Right now, we are looking to stabilize and then likely wean back steroids once counts hopefully come up. I know Dr Kuter was consulted as well re nplate and i trust my hema docs. They were 7,000 today after 1,000 yesterday (when I was given transfusion). I will take that and hope tomorrow is same or higher.

I am still convinced my 2 very recent severe stomach viruses precipitated relapse. They were both very severe stomach viruses although H pylori was negative. Is there any other stomach viruses known to cause ITP relapse?

Any type of virus or bacterial infection can bring counts down. There doesn't have to be a specific type.

That's what I figured, but had done well for quite awhile, even through various colds/viruses over a decade until these recent stomach viruses brought the itp back.

Pure conjecture: but imagine you get a virus that looks (to your immune system) sort of like platelets. It's easy to imagine that as your immune system mounts a defense, it gets confused and spreads the virus-fighting net to wide and tags platelets to destroy, too. Once the virus is gone, the immune system may or may not realize the threat is gone(since it's been fighting both the real virus and the platelets), so things may or may not return to normal.

Tamar, I am following along with what you said, it will always be conjecture in this space. Just wondering if it took a particularly brutal 6 week stretch of virus, stomach virus, virus, stomach virus (severe) to pull me out of a 12 year remission. We will never know, but certainly possible.

On other news, just got back from my counts today. They moved up to 17,000 this morning (sun) after a low of 1,000 Friday (before same day platelet infusion) and only 7,000 Saturday. Again, fully expected the platelet infusion to provide nothing more than a 1 day cusion at 1,000 until something kicks in as my body likely is removing them so rapidly. Hopefully the 80 mg daily prendisone since Thursday and 1st nplate shot (thurs) is kicking in as I had been a steady downward trajectory for past week. More counts tomorrow and hope for incremental improvement.

Regards,

Counts increased to 33,000 today. Hoping I have turned a corner.

That's great!

Hoping for the best NJITP!

Thanks, this community has been a great resource during a stressful time. Next count is in 2 days, along with my second nplate shot.

Nplate for me is the only thing that works after 2 failed splenectomies. The injections are to be given every 7 days. My count usually is higher if the dose is increased or remains in a similar position within the first few days after the injection. Getting close to time for the next injection is when my count starts to go down.

Glad to hear the nplate works well for you. How long have you been using it and how quickly did you respond from the 1st injection?

I believe it within the first couple of weeks after an injection each week that I saw an increase both times I have taken it (before my 1st splenectomy and before and after my 2nd splenectomy). I used it for a couple of months before my 1st splenectomy and have been on it for several months this time.

Counts shot up today to 231,000! Was 31,000 two days ago. Prednisone reduced to half as well as my weekly nplate