For those who have used N-plate but stopped

If you used N-plate as a treatment, but stopped, why? Don's brief history with ITP treatments began in May with steriod IV's and platelet transfusions, followed days later with IVIG. Tappered off steriods the month later with Prednisone, had one add'l treatment with IVIG, counts dropped. Went back in the hospital end of June, received large dose of solumedrol, platelet transfusions, counts stayed low (3-4). Started taking N-plate first of July, counts slowly went up 4,6,8 then 62, 82, 23, 60, 99, down 19,23, up 128, down 31 and now today 7. Docs are puzzled, increased dose today (is at 5mg I think). In the meantime he's started, stopped and is now back on 3 drugs (for other health conditions) that are on the list of drugs apparently known to affect platelets. Doc doesn't think those drugs are affecting his counts, but??? He's had bone marrow biopsy when this all started and everything checked out OK. Isn't having many symptoms, so I'm not worried yet, but wonder what he'll do if N-plate isn't working. He's also low on iron supplies, so they started Venofer IV. Any ideas guys and gals? As always, thanks for any info.

Hi donswife,
I just wanted to mention that I, too, have my iron level go down when my platelets go down. I'm not sure why--but for some reason (since I am also over 60), all my CBC goes a little weird along with the platelets. Since my platelets have gone up for now, my iron, white, hemoglobin, etc, have stabilized. It's really been stressful as the CBCs go off--as I try to eat really good to make up for the difference.

As far as taking drugs for his other health conditions--this is something that you really cannot help to avoid; especially, since he needs the medication. I was taking doxepin for years to help me sleep at night (known to lower your platelets), and I stopped taking it about a month ago. But, I substituted another medication for it. Since then, my platelets have gone up--but I don't know for how long as I am also still on Decadron for another month. Maybe it's just going to take a little time to get him stabilized again. The doctor couldn't believe all the trouble he had with me--and I know it's not the end. Sometimes our body goes through this plateau and just needs to build back up again from all the stress it's gone through. As long as he isn't having any bleeding symptoms, he should be fine. Let's see what other have to say who have experience with these medications.

Donswife -

It took 15 MONTHS before I maintained good counts on Nplate, maybe it will take some time to "kick in". I've been maintaining high counts for a year and 6 months on Nplate. So, other than bad side effects, I can't imagine why Nplate would be stopped before giving it a fighting chance.

I know what your going through. My poor wife has had to deal with me and my ITP for 20 years - but her support has been terrific. It was very traumatic for her at first, but It's old-hat to her now!

Best of luck to your husband.

I stopped taking it cause A it wasn't making my platelets rise as high as they should have and B cause it was starting to have adverse side effects in my white and red blood counts. Both of the went sky high and I was developing these blasts that can turn into leukemia later on so it had to be stopped, we didn't really have a choice and since I have stopped it, my red and white counts are back in perfect range and the blasts in my blood and bone marrow are now completely gone. Although I had a bad experience with it doesnt mean your husband will too.

I tried Nplate for 14 weeks with wild count swings almost weekly. Ask your Doc about trying Promacta. This is similar to Nplate as it also encourages platelet production. However Promacta is a pill-a-day versus a shot a week with the Nplate. I reacted very differently with both meds but I won't go into details. I expect to re-start the Promacta in a few weeks. Keep trying.......

Hi donswife Ya know, you've been on there boards for a bit now and I still don't know your name! Not sure if you've posted it in any threads or not, sorry.
Nplate...I had it for a short bit, like 6 weeks or so. It brought my number way, way up but I had very bad joint and muscle pain and I was on Rituxan at the same time, so I just stopped the NPlate. I won't go back either, if the need ever arises! I know that the dosage they give can affect the count. That could explain the strange drop in his numbers. Maybe they dropped the dose. I dunno! Praying.

Thanks for everyones input. The first time he went up to 99 they decreased by 1mg the dose, so I figured that's why the drop the next week. But he's been on the same dose for the last three weeks, just upped it this Friday. He's suppose to go back to the hemo for another blood test on Monday, so here's hopping he's at least staying the same or up (not down). We just got a new handicapped van for him to drive and they're putting in the hand controls and wheelchair docking device in on Monday also, so I'm really rooting for him not to have to go back in the hospital. He's really itching to drive his new van. My name is Nancy, but so many of the doctors call me Don's wife so that's why the login.

Hello Nancy! Nice to meet you, even though you've been around for a bit!
How exciting for Don, and you, to be getting a van with hand controls for him to drive! I remember when my dad got his first van with hand controls. It was cool! Happy driving to Don!
Can't wait to hear what his counts are tomorrow!

My niece has one of those vans. She has CP, and the van has given her independence she never had before. It's amazing.

Good for Don!

It appears that Nplate isn't working for Don right now. His count today was down again to 3, but they let him go home. Darn, I hope he hasn't developed a resistant antibody against Nplate. Anyway, got the van, and he loves it. Bad and news I guess for now.