Nplate can't do this anymore

I've had itp for 14 years now just had my second and last baby. During pregnancy I was doing ivig twice a week to keep my numbers around 20 it's really short lasting and very time consuming and with two small children at home it's not an option anymore. I've also been on nplate when not pregnant I had a stroke from too much of it back in 2011 where my platelets went to 900,000 i started it back right after I had my baby 3 weeks ago and I'm not handling it well I get so much pressure on my neck eyes and head it's hard to even function this happens about 3 days after the shot and lasts until usually when I'm due for another shot so there is only about two days a week where I feel good I don't know what to do anymore the first dose I got was 275 my platelets were 88 so I talked my dr into lowering it to 250 but had the same thing happen this used to happen but only if I went over 300 I can't keep living like this and with no treatment I'm usually about 3-5000 platelets. Nothing works on me but ivig and nplate and I'm at a loss I just want to feel good. Any suggestions are welcome I'm posting this here because I'm sure you guys understand how bad side effects can be and if it's even worth it. I'm really thinking about just taking a gamble and stopping treatment all together but I don't want to have petechiae everywhere all the time I am trying my hardest to be a good mom playing outside and doing everything my son wants to do but when I feel like this it's extremely hard thank you for listening

Ouch Kelirae!
On the one hand it's great that you are able to get a response on something, but on the other hand those side effects sound pretty debilitating for you. Especially considering your previous stroke and extreme response.
Have you already tried Promacta (the other TPO-RA)? I find the pill format really convenient and it seems that lots of people get a response. If you've already tried it and ended up with Nplate because it worked where Promacta didn't, then I don't have any good advice.
I personally am ever more tempted to continue to decrease my use of medication and see at what point I get symptoms again. An asymptomatic low number sounds a lot better to me now than just about any treatment. I feel like these crazy big platelets I've got from taking Promacta are making me asymptomatic at pretty low counts. Is there any way that you can decrease your Nplate dosage even lower to see if it helps with the side effects? What is the smallest dose you can take to relieve symptoms? Going up to 88 sounds plenty (too!) high. I'd try to talk my doctor into dropping the dosage until I ended up with counts around 30. If you don't have symptoms around that level, then maybe that could eliminate your side effects? It sounds like you are a super tricky/refractory patient in general, though

Sounds like a good experiment in theory, but most hematologists aren't keen on going lower with numbers and are more likely to tell patients to suck it up with side effects or bail on the treatment entirely. Maybe you have a flexible hemo

Hang in there, the first weeks with a new baby are soooo tough to start with. I am sorry that you have to deal with the stupid ITP flares in addition to the sleepless nights!

Yeah I had no response to promacta my dr doesn't believe the side effects are that extreme but I will be having a convo with him tomorrow

Unfortunately I am super tricky and my itp is a royal pain but if the nplate is going to make me miserable it's not worth it my husband goes back to work in a week and dreading it cause if I feel like this it's going to be super hard

I'm crossing my fingers that you can somehow avoid the pain by having a lower Nplate dose... here's hoping!

My only advice from having survived when my three boys were little is baby wearing! I had this German woven wrap called a Storchenwiege and a friend who taught me how to tie it in all of these crazy ways to wear my baby on the front, side, and back. It was a life saver. If you don't already do babywearing, I think an ergo sling is supposed to be a relatively easy way to do back carries without learning all the ties. Regardless, being able to have the baby on my back and two hands free to manage the toddler/housework/cooking/etc. was priceless. It got to the point that I could even pop the baby in the wrap and nurse it while walking around and doing other things. Youtube has tons of videos if you are curious.
Enjoy your last week of your husband at home

I did baby wearing a little with my first son I have a moby and can't remember the name of the other one I'm hoping this one loves his swing as much as his brother did so far so good lol inside is a good idea but I live in Florida and the heat of summer I think He would be too hot to wear him it's outside it's April and was 92 yesterday but for sure a round the house would make things a little easier I swear everytime I feed the baby my two year old has to have something right then! Lol and as for the nplate my dr is just going to have to understand I'd rather be at 20 then 80 if these are the side effects I also think maybe he should of started me off slower instead of jumping right back into my doseage before I was pregnant I haven't had it in 9 months so it might have been too much to soon

My hema will not give me a shot above 50. So you can try that then adjust your schedules.

This works out great for me since my counts only fall below 50 after 3 weeks.

Wonderful that you have 2 beautiful children! So happy for you! Its not easy to have successful pregnancies and births with ITP- but you did it! yay!
Hang in there- having a new baby is so hard, it gets so much better with each passing month. I think adjusting the dose of Nplate seems like the most reasonable idea. Its not real safe to have platelets under 10 esp being a new mom, so just my opinion but no treatment seems risky. 20-40K is much better I think. You have good intuition and lots of ITP/Nplate experience so you'll do whats right.

I get headaches from Nplate- worse on the higher dose. They are across my forehead when I wake up in the morning. I drink coffee and they go away. Do you drink coffee? You might try it. Also I have been told by a nurse that I seemed dehydrated and that can cause headaches too. so trying to drink lots of water esp important in the heat. Lowering my dose from 453mcg to 412mcg made a big difference in side effects.
Also I get more side effects when I start Nplate after being off of it. So maybe your side effects will lessen over time- I hope so!

So hoping the side effects get better it's not really a headache the only way I can describe it is it's like I dwell in my face and neck and all feel is pressure my eyes hut to touch my eyelids swell my chin swells I can easily go up 5-10 pounds when I feel like that I get the feeling of wind of my ear and just pressure everywhere in my neck and head and going from laying to sitting or sitting to standing is horrible

Was at 24 today so wouldn't lower my dose urg

I was just wondering if anyone else was having trouble with N-plate and there was your post. I have been on N-plate for a year but my platelets rarely get above 100K, lately they have been about 30K. The longer I have been on N-plate the more problems I have had from it: joint acheyness, fatigue, pins and needles in hands and feet, general acheyness, headaches. Besides IVIG this is the last treatment to try and the only treatment to work. I also have two kids and it is frustrating not always being able to be as active with them as I would like. Mine are 11 years old so it is easier for me than with little ones. Is anyone else having any of these problems and is finding a way to cope?

Hi Kharys~ Sorry to hear you are having such side effects from Nplate. Have you tried Promacta? I've found the side effects different on Promacta.
I have been on Nplate for 2+years. I haven't had really bad side effects so I'm not too helpful with answering your question. But I have had Nplate headaches and drink coffee for them. They are morning headaches- I wake up with them, and seem to go away after a cafe latte. I also notice that I have more side effects- achiness, fatigue when I am under stress. Had a bad week emotionally- just a lot of stress at work and noticed I felt really bad physically after my Nplate injection. Also the side effects are much worse on a higher dose. I get a dose of 408mcg each week, but for a while I was up to 495mcg and could really feel the difference. I also get insomnia the night after an injection, but that also is better on the lower dose. Sounds like you can't lower your dose at this point. Good luck - hope you find a solution.

I have tried pretty much everything else, including promacta, without any results. So this is the last thing besides IVIG. Achey and tired seem to be my go to side effects for a lot of treatments though. If my platelets will stay above 30K my doctor may be able to drop the N-plate dosage and then it will be a bit better.

The last few weeks I've been 120 112 and 95 so my dr is lowering my dose a little bit the side effects got a lot better must have just been starting it again still get headaches but was just told my irons pretty low Ferratin 15 saturation 20 so that could be causing some of the symptoms I thought nplate was doing thank you all for your responses I love this website makes you not feel so alone esp when no one in my family has any kind of Illness what so ever lol

Kelirae24 wrote: The last few weeks I've been 120 112 and 95 so my dr is lowering my dose a little bit the side effects got a lot better must have just been starting it again still get headaches but was just told my irons pretty low Ferratin 15 saturation 20 so that could be causing some of the symptoms I thought nplate was doing thank you all for your responses I love this website makes you not feel so alone esp when no one in my family has any kind of Illness what so ever lol

That's great! I hadn't read this post when I commented on your iron post. I'm glad to hear that NPlate is working so well for you and that the headaches are better. :woohoo:

Good news, Keli! I hope it continues.