Recently diagnosed trying Nplate

Hello everyone! My name is Valerie. I am 27 years old and live in Cincinnati oh. I have enjoyed reading your stories. So many seem so much like mine. I finally have the courage to tell my story.

At the end of September I received a flu shot. The injection turned bright blue and purple. I just assumed it was a weird reaction to it and didn't call the doctor. I was very tired and cranky for months but thought I was just stressed due to work and finishing up my masters. The week of December 17th I lightly banged my head and had a huge embarrassing bruise. Then the red dots began on my arms face and chest and then in my mouth. I called my primary doctor and she got me in right away. She thought I may have been having a reaction to lexapro even though I had been on it for a year and a half. She sent me to the lab for blood work. At 530 on Friday night my platelet count was at 20 and I was in icu. I received IVGs and 60 mg of prednisone( the doctor said this was my maximum for my weight). By the morning my platelet count was at 50 and doctor said to stay on prednisone and get blood work 3 days later.

My blood work came back at 105, 3 days later so my doctor and I were hopeful. I got checked the following week however and my levels had dropped to 32. My doctor recommended doing Nplate injections. It took 2 days to get the paperwork in order. On Thursday my platelets were at 24. He then administered Nplate and I qualified for drug assistance. I will be going back to doctor for labs and an injection this week.

I am trying to stay positive but honestly a little scared. I'm glad I'm not alone out there,

Has anyone done Nplate out there. If so how successful was it and how long did it take to be effective.

Hi Valerie,
I've never done NPlate, but I did want to welcome you to the forum. I'm glad you decided to post and share your story. So many ITP'ers have had reaction to flu shots, so I'm not surprised that this has happened.

I do think it normally takes a week or two for NPlate to finally "kick" in, so please try to be patient. Stress does seem to add to a low platelet count, but it is hard to slow down when you are young and busy There are quite a few how have used NPlate and, hopefully, they will post and let you know a little about their experience.

Try not to worry too much and read as much as you can on this forum. Good luck to you!

Dee Dee

I am now on the 2nd time getting Nplate. I had been getting it prior to my splenectomy in July of last year. It helped for a while. Now I am on it again. My counts are all over the charts but we (my doctors and I believe that it may be due to my accessory spleens). It normally keeps me in a safe real of counts between 50 and 100. The biggest side effect that I notice is that when my counts are low my joints and muscles are sore, which I attribute to the Nplate working harder in my system. It is a pain to go to the doctor's office weekly to get the shot but it has helped and that has made it worth it. I am not in Cincinnati but in Nashville, TN so if you are ever this way I'd love to get together with you and share my ITP journey thus far (just over a year for me now).

Thank you for your support, I have a great support system but it is great to know that I am not the only one battling itp, thank you for sharing about your experience with Nplate. I too have sore muscles but wasn't sure if it was from Nplate or prednisone or just my body fighting. I hope round 2 of Nplate is successful. Keep me posted. I have a silly question but what are accessory spleens.

This 2nd round of Nplate isn't going quite as well as the first did for me. It also appears that about every 6 months my counts plummit. Accessory spleens are just extra spleens.

Chasty,
Can the doctors remove your accessory spleen? I've heard that they have done that before. Or, will you just grow back another one?

Surgery to remove my accessory spleens is scheduled of 2/14 as well as having my gall bladder removed at the same time (I have a gall stone that's causing problems).

Hey everyone!

Things are not going so well for me. Yesterday my platelet count was at 6. I will be doing IVIG today. I have had 5 Nplate injections and 3 out of 4 retuxin treatments the past two months as well as prednisone and decadron .My hematologist did a bone marrow biopsy yesterday since i have been unresponsive to the treatments and wants to rule out everything but is 99% sure it's ITP. He is going to meet with his colleagues after results are in to discuss further treatments. He really doesn't like spleenectomies but is giving me that option if I choose, which doesn't sound great to me. Do any of you know of any other options which are not so invasive?

There are many other treatments out there and I would have splenectomy as a last resort (my personal view ).Splenectomies are less in fashion here in the UK than in the US. TPO's are really maintennance drugs for keeping safe platelet levels using minimal doses. Another TPO worth considering is Promacta which is taken as a daily tablet.many on the PDSA site have had Rituximab infusions and had complete remission for many years. then there are the steroid sparing immunoupressants such as MMF (CellCept) or Immuran .I have had good success with the MMF , but pay the price for being immunno-suppressed. I know that these approaches are well known on this site and been discussed extensively ,but to those of us still in the relatively early stages of diagnosis and coming to terms with it ,and had some failures ,I think they are worth repeating occasionally Good luck.
Derek

Sometimes, I think our body doesn't respond when too many treatments are given too close together. This is just my personal opinion. I know my body is this way. I always need to give my body a little rest before I proceed to the next treatment. I know it's scary when you know your platelets are so low. But, a lot of these meds are really harsh and it takes the body time to heal from each one.

I know it gets you scared, but try to stay positive and take care of yourself in the meantime.
Good luck to you and hope you get those platelets up real soon.

Dee Dee

Hi there I live in Scotland have been using Nplate since August still trying to get a steady balance but at least it's keeping me in a safe place I self inject which I find easy saves going to clinic every week but downside of this is still have to have blood count done from local nurse every week then phone to see if I need to inject I always have injection in fridge ready for use downside of this so a bit tying still as I say at least I'm in a safe place

Hi Marosa,
It sounds like you are doing good, especially since you can self-inject. Hopefully, the self-inject method will get approved here in the United States. As long as you are staying in a "safe zone", that's what is important.

Good luck to you.
Dee Dee

Hi Marosa. I too live in Scotland , just north of Edinburgh, and find treatment choices for ITP are very good. Because I live close to a good Haematology Department it is easier to get the CBC done very quickly and see the Consultant. At first it was weekly visits, but slowly visits are now at 8 week intervals. Like most people I hoped to get my life back quickly but slowly it happens. If my current MMF treatment stops working a TPO becomes a real option for getting a "safe count" so I am reading about other people's experience with Nplate very carefully. I know of one case personally where the Nplate suddenly stopped working . Just hang in there and good luck.
Derek

That's great that they let you do that there.

I agree. I am going to finish the last dos of retuxin next week and carefully consider my next options. It's just scary when the count is so low.

Hi vaughanderek I'm wondering how long Nplate will continue to work as counts only 75 after 250 dose so have had to up my dose to 500 this week It's so unstable but at least in safe place hope your treatment continues to work Sarah

Hi Sarah, Nplate ( Romiplostim in the UK ) is intended as a maintenance drug only giving a " safe" platelet count consistent platelet count only with the minimal dosage dose on a weekly basis (ideally). I would be happy to have a count I that range,so a count of 75 is quite fine. My mycophenolate morfetil (MMF ) is taken at a highish dose at 2g per day and my counts are regularly in the 90 to 100 range.Idid ask if that dose could be lowered so that I would be less immuno-supressed but that was not advised. Some people go through periods of lower counts while continuing the same treatment for no particular reason, or having a cold, etc. As I said I am watching people's responses to Nplate both on this PDSA site and the UK ITP Support Association site. Derek

Hi Derek as I am in Scotland I also refer to Nplate as romoplostim agree 75 is fine but sometimes 250 not enough to keep count up hence consultant decides to give 500 then I tend to worry till next count hoping wont go above normal count hope you keep safe Sarah

I had tried every treatment option besides splenectomy at this point after being diagnosed when my level was a 2 in December.I I did prednisone, n plate, IVGs, and rituxan.i IVGs work but very temporarily. My doctor was trying to convince me to get a splenectomy when my counts reached 6, but I was very reluctant. He did IVGs and two weeks ago my count was 50. I ended up getting a very itchy rash later in the week and called my doctor after trying Benadryl. He put me on a methylprednilisone pack last Sunday. On tuesday my count was 251. We are not sure if it was the steroid or possibly the Nplate from week before. prednisone and decadron didnt do much. However, as the week has gone on and I finished the pack, I am getting bruises and petichae again. Could it be the methylprednilisone Worked or possibly something else? Has anyone been on it to treat their ITP?

I think it lasts anywhere from 5-14 days. My doctor said anywhere above 30 is safe, but would prefer to be above 50 for him to feel safe. I was given 350 11 days ago, but was on steroids for a rash but was up to 251 last week and now know my levels have fallen because I have bruises and petichae. Since my level was high, he didnt give me nplate So now I need to figure out what worked so I can get a safe stable platelet count going!

Vdeutsch,
It sure seems like your doctor has thrown a lot of treatments at you in such a short period of time! It's hard to tell what's working and what is not working. The IVIG can temporarily bring up your count. The N-Plate would be more permanent--but it probably depends on how long you were on it. Try not to dispair, but be patient in figuring this out.

Diane

Vdeutsch,

I hope for the best for you. I can imagine how you feel, as my Girlfriend has also been diagnosed just recently also at 27. No treatment yet because the numbers never went below 59K.

Hang in there.
Regarding the flue shot, you think that was set the ITP in motion?