Nplate

I have been on prednisone 14 months. When I start weaning off my platelets go into single digits. I had splenectomy 2017 not by choice but my colon ruptured my spleen was swollen so doctors removed it.I had relapse in 2023. I am 71 year young. I can't do Rituxan because of chance another perforation with the infusion plus I don't need 2 colostomy and chances of living through another is slim. I did brain scan showing JC virus so am at high risk for PML. 

I speak with my hema tomorrow about the Nplate shot which I had taken previous before splenectomy. I've been fighting ITP for 26 years.

My question is taking Nplate shot how many mg will I need of prednisone? One of my goal is to get completely off prednisone because of effect it's doing to my body long term. Will hema start be back on 60mg I'm taking 30mg now.

I can't count times I'm been in hospitable getting IVIG past year. It's been a depressing adventure.

I'm at my wit end fighting this I'm depressed every waking day not knowing the right route to kerp counts up at least 50,000.

Hope someone can answer my question I don't trust my hema PA She's not very understanding I can't change hema long traveling it not an option for me 

Thank you 

Hi, Charlotte.
None of us are really qualified to tell you what dose of any medication to take.  The only one who can do that is your doctor.

I understand CindyL I should have never asked ... sorry

No, don't apologize for asking, Charlotte!  I didn't mean to make you feel like you shouldn't have asked. Truthfully, I'm surprised no one else has replied.
Don't hesitate to ask if you have any more questions!

Hello, Charlotte.  I'm Janet. 

I first want to apologize for not responding to you right away.  Even if I couldn't answer your question,  I should've offered the moral support that is one of the main goals of this group. I deeply hope you're still here to read this.

You may not realize how much I've already learned from you!  I had never heard of JC virus or testing for it.  That would've been nice to know before I agreed to take Rituxan.  It was it's own kind of nightmare for me, but at least I didn't get PML.

I'm soon to be 75, have had ITP since 2008, have been treated with prednisone, and was weaned off of it once it was clear that NPlate was going to work for me.  There was a point when my hema believed I should be taking both drugs, because my counts were fluctuating all over the map.  I decided on my own to contact one of the leading NPlate experts in the country who told me it works best on its own to avoid those wild fluctuations, and it shouldn't be partnered with other treatments.

In all this time, I've come to discover that the experts can have their theories, but ITP doesn’t give a fig about them.  I've seen multiple people here who've had to adapt the standard treatments to their own bodies' quirky responses and are doing fine.  I'm one of them.  I only need a miniscule dose of NPlate every 2-4 weeks.  Counts stay in the 60 to 150 range most of the time.  Best of all, I take prednisone as extra insurance against a.platelet plunge only when I need a surgical procedure or invasive screening test.

Did NPlate work for you before?  If so, it would be absolutely reasonable to ask about a slow taper off the prednisone to see what happens.  I completely understand your desire to be rid of it.  My bones can't tolerate any more onslaught than they've already endured. 

I hope this helps, at least a bit.  Again, I'm sorry to be so late.

Oh Charlotte (our granddaughter would have been named Charlotte had she been born on schedule but she wasn't and her parents best friends named there daughter Charlotte so they picked a different name so things wouldn't be confusing - it is a beautiful name, also a family name in our family) - anyway, NEVER say you are sorry on this site, we don't allow that     Your question was legit and WE are sorry we can't answer it. 

You have a lot on your plate bless your heart!!  I'm sorry I didn't reply sooner but I know nothing about Nplate - I've had ITP since 1989 and have just had prednisone and one IV of WinRho when a tetanus booster dropped my count to the gutter, have had no treatment for a number of years but my count is not in the normal range.      I'm not telling you this but I'm older than you and Janet and so happy when birthdays roll around because I've lived another year!

How low does your count go when you start to wean off prednisone?  Are you doing a nice slow taper? 

The one thing certain about ITP is there is nothing certain about ITP.  My ITP actually was caused by a Gamma Globulin injection we had to get before moving to Tokyo or my husband's company wouldn't have let us move - it's not a 3rd world country so we never knew why they required it.  And Gamma Globulin is like  IVIg, so something that should help ITP caused my ITP.  Crazy !

I'm sorry you are depressed but I can understand why!  Please be sure to come back and ask any question/s you want - if we can answer we certainly will - if we  can't we want to support you, encourage you and help you - you are part of our family!!   

Please keep us posted on how you are doing!!  Good thoughts going your way!!
Melinda

Charlotte

I've had 2 spells on  NPlate both times my count was up and down like a yoyo. The second time my hip bones ached so much I gave it up as a bad job when my count dropped to from over 100 to 15. 

I know someone who calls it the shot from hell. She hurts for a number of days after it, plus a headache. But it is the only thing that keeps her count decent, and hers will drop real fast so she gets the shot every week unless the count is good.

Hi,

Please see my new post on NPlate. I wanted to put it out there for all to see.

Thanks.
 

Hi MommaBear
Sorry to hear your story.
In my opinion, switching to Nplate or Avatrombopag is a great idea if you don't have a medical contradiction. I assume you have good insurance that covers your IVIGs so getting this covered should be possible.

Regarding your concern about ditching prednisone, from what I remember +80% of patients on these meds do so. The few still needing to take pred will usually take less than 5mg as both medications have a great synergy.