Nplate

Would like to know if there is anyone who has been on Nplate for more then a year? And if there is anyone who has had this treatment work for them after they stop treatment.

HI, I have for over three years. It helps keep my counts at a safe level (30 -50). My recent worry is long term use may have repurcussions. Am seeing my hema next week and will be addressing this concern.

I've been on it for a year and a half.
Still trying to get a stable 50 count and get off prednisone completely.

Saw my hema yesterday and I asked about long term repurcussions of NPlate: he told me the only one could be scarring in the bone marrow, this is checked yearly with the bone marrow biopsy. I have slight scarring which has not increased since 2014. BTW my plts were 67 yesterday - great for me.
Remember we are all different and react to medications in different ways. Hope this info helps.

Hey Paula,

I was on n-plate for 2 years roughly and since my last admission into hospital I have been off it with holding results for 3-4 months maybe even more as my memory is not great for January and December.

My time on the drug was pretty stable I didn't have many if any bleeding incidents and found it kept my levels really stable hope that helps a little

If you want to ask something specific I am all ears

If this helps any, I have read of people who have been on N-Plate for more than ten years with no bone marrow problems. I have also heard of people having problems after only a few years too, so you never know. As long as your Hemo stays on top of things, your risk of irreversible damage should be fairly low.

I have a related question- if a person on Nplate develops reticulum/fibrosis in the bone marrow, will the beginnings of that problem be seen in a CBC? Or is a bone marrow biopsy the only way to catch it?

I asked my hemotologist a few years ago and he said changes in the bone marrow would be seen in a CBC. I asked him again recently and he seemed to say it would be seen in a bone marrow biopsy.? Not sure, he didn't think it was anything to be concerned over.

But I have read a few stories of people on the forum who have developed reticulum- then someone recently having a bone marrow transplant? That is terribly serious but didn't get the details of why the problem wasn't caught earlier when it would be reversible. thanks- Ill check out the Nplate site.

Increased bone reticulin is generally detected from changes in peripheral blood smear and CBC and confirmed with bone marrow biopsy.

www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/000942/WC500039537.pdf
Increased bone marrow reticulin
Increased bone marrow reticulin is believed to be a result of TPO receptor stimulation, leading to an
increased number of megakaryocytes in the bone marrow, which may subsequently release cytokines.
Increased reticulin may be suggested by morphological changes in the peripheral blood cells and can
be detected through bone marrow biopsy. Therefore, examinations for cellular morphological
abnormalities using peripheral blood smear and complete blood count (CBC) prior to and during
treatment with romiplostim are recommended. See section 4.8 for information on the increases of
reticulin observed in romiplostim clinical trials.
If a loss of efficacy and abnormal peripheral blood smear is observed in patients, administration of
romiplostim should be discontinued, a physical examination should be performed, and a bone marrow
biopsy with appropriate staining for reticulin should be considered. If available, comparison to a prior
bone marrow biopsy should be made. If efficacy is maintained and abnormal peripheral blood smear is
observed in patients, the physician should follow appropriate clinical judgment, including
consideration of a bone marrow biopsy, and the risk-benefit of romiplostim and alternative ITP
treatment options should be re-assessed.

Rob thank you! Brilliant! I appreciate this so much- I looked and couldn't find anything at all. It has been a bit of a worry to me, this thoroughly answers my question. I see now that my hemo knows this.

Regarding the story of a person needing a bone marrow transplant after being on Nplate, my hemotologist thought it was possibly a misdiagnosis. Instead of ITP, a person might have actually had ?? some sort of blood/bone marrow cancer- can't recall what name he rattled off. So Nplate would not have been appropriate.

Was it myelofibrosis?

It started with an "m", so yes, I think it was myelofibrosis. I read on Mayo Clinic site that a person can have low platelets and enlarged spleen with that disorder.

I believe I've read here on the forum that there are several disorders that can present with low platelets, so I see where its very important to be certain you have ITP before getting into these drugs like Nplate.

MDS (Myelodysplastic Syndrome) is another one.

I think that by the time reticulin shows up on a CBC, it's already an established problem. It probably is still reversible though as long as the doctor is astute and on top of things.