ITP Diagnosis and Patient Stories

Hearing stories of other patients with chronic ITP can provide help and emotional support to help cope with the challenges of a chronic disease. Although everyone’s experience is different, each person’s story can impart wisdom and inspiration. Individual results may vary.


Lib, chronic ITP patient on Nplate®
“I have ITP, it doesn’t have me!”

Lib's story transcript

[Lib]
I'm determined not to let chronic ITP overwhelm me. I'm respectful, mindful of the limitations that the disease puts on me, but I don't give it any more power than it has to have.

I live in ah, rural central Virginia with my husband of four years. We're on 40 acres in farm country. Couldn't be a prettier place. We have a mobile home on the property that I'm able to use as an art studio. Me and my girlfriends get together up there pretty regularly… work on various projects. Right now, we’re focused on clay art.

I learned that I had ITP quite by accident. It all started when my chiropractor asked me how I got a big bruise on my leg. I told him it just showed up one day. He suggested I go see a doctor.

My doctor ran some lab tests and I got my lab results back and learned that all the bruises I was getting meant something, that it was ITP.

Once I knew I had chronic ITP, I wanted to learn as much about it as I could. I'm not a doctor. Uh, you know, I read what I could, learned what I could, but it was all pretty overwhelming to me. I was real fortunate, I have a hematologist who is very familiar with ITP and was willing to educate me about my disease and what the available treatments were.

Well initially the treatment options were pretty limited. My doctor put me on a daily dose of prednisone, but since long-term use of prednisone isn't recommended, the idea was to gradually taper me off that drug. Tapering was a slow process and of course my platelet count went down and the bruising came back. I was at my wits end, so I went back to my doctor to figure out what’s next.

Early on, my doctor mentioned considering a splenectomy, and I remember thinking, “Would I really have to have surgery just because I bruise?” But as I did more research and spoke more to him I learned that splenectomy was a treatment option for ITP. And that was the next one we tried with me. I went from diagnosis to splenectomy in maybe 8 months. Unfortunately, soon after my surgery I started experiencing single digit platelet counts again; the splenectomy didn’t work at all for me.

Well, for a long time I just put up with the bruising and tried to be as careful as possible. That is, until I developed a subdural hematoma. Uh, bleeding on the brain. And that really got my attention. That shook me up and made me realize that I needed to take action and I needed to try and find an alternate treatment.

At a patient support group meeting, I heard about this drug for adult chronic ITP called Nplate® .

[Narrator]
Indication
Nplate® is a man-made protein medicine used to treat low blood platelet counts in adults with chronic immune thrombocytopenia, also known as ITP, when certain other medicines, or surgery to remove your spleen, have not worked well enough.

[Narrator]
Nplate® is not for use in people with a precancerous condition called myelodysplastic syndrome, also known as MDS, or low platelet count caused by any condition other than chronic (lasting a long time) immune thrombocytopenia or ITP. Nplate® is only used if your low platelet count and medical condition increase your risk of bleeding.

[Narrator]
Nplate® is used to try to keep your platelet count about 50,000 per microliter in order to lower the risk for bleeding. Nplate® is not used to make your platelet count normal. It is not known if Nplate® works or if it is safe in people under the age of 18.

[Lib]
Well when I heard about Nplate® , I took the information to my doctor and asked her if she thought it would be an appropriate treatment option for me. And she put me on it. And, gosh, within just a few weeks my counts started going up. Uh, took a couple of months to tweak the dose and get it just right. But once the doctor found the right dose for me, I stayed on that dose for a while.

[Narrator]
Important Safety Information

Please note, when you are being treated with Nplate®, your healthcare provider will closely monitor your Nplate® dose and blood tests, including platelet counts.

Injection of too much Nplate® may cause a dangerous increase in your blood platelet count and serious side effects.

You must have blood platelet counts done before you start Nplate®, during Nplate® therapy, and after Nplate® therapy has stopped.

[Lib]
I am careful about not missing my weekly appointment to get my Nplate® shot. So for me I schedule my appointments at the same time and the same day of the week every week and it helps to keep me on track with the regular injections.

I go in every Thursday morning and I’m usually in and out within an hour.

My husband and I like to travel around the country; and whenever we're trying to plan a trip, of course, I still have to have my weekly shots, so I use the Nplate® Call Center, which can help me find a local doctor and coordinate my injections.

And then, you know, once in a while I'll have some sort of a question might come up with insurance, and the Nplate® Call Center generally is able to help me with things like that.

My best advice is arm yourself with knowledge, stay current on what's going on with treatment options, pay attention to your body, and communicate well with your doctor.

It's essential to have a good relationship with your doctor. There needs to be trust and you need to be honest with them. Tell them what works for you and what's not working for you.

I live in the moment. I've always been somebody that just enjoys the day to day, and I like seeing where the journey's gonna take me. Uh, I recognize that I have ITP and I have to be respectful and mindful of that; but I have ITP, it doesn't have me.

[Narrator]
Important Safety Information

What is the most important information I should know about Nplate® ?

Nplate® can cause serious side effects:

Worsening of a precancerous blood condition to a blood cancer (leukemia) Nplate® is not for use in people with a precancerous condition called myelodysplastic syndromes, or MDS, or for any condition other than chronic (lasting a long time) immune thrombocytopenia, or ITP. If you have MDS and receive Nplate® , your MDS condition may worsen and become an acute leukemia. If MDS worsens to become acute leukemia, you may die sooner from the acute leukemia.

Loss of response: If you do not experience results from Nplate® , your immune system may have created a response that is counteractive to Nplate® . Your healthcare provider will monitor your platelet counts and test your blood regularly to determine if this is an issue.

Higher risk for blood clots:

  • You may have a higher risk of getting a blood clot if your platelet count becomes high during treatment with Nplate® . You may have severe complications or die from some forms of blood clots, such as clots that spread to the lungs or that cause heart attacks or strokes. Your healthcare provider will check your blood platelet counts and change your dose or stop Nplate® if your platelet counts get high.
  • If you have a chronic liver disease, you may get blood clots in the veins of your liver. This may affect your liver function.

Blood test monitoring: Your healthcare provider will check your platelet count every week and change your dose of Nplate® as needed. This will continue until your healthcare provider decides that your dose of Nplate® can stay the same. After that, you will need to have blood tests every month. When you stop receiving Nplate® , you will need blood tests for at least 2 weeks to check if your platelet count drops too low.

What are the possible side effects of Nplate® ? Nplate® may cause serious side effects. See “What is the most important information I should know about Nplate® ?”

The most common side effects of Nplate® are:

  • Headache
  • Joint pain
  • Dizziness
  • Trouble sleeping
  • Muscle tenderness or weakness
  • Pain in arms and legs
  • Abdominal pain
  • Shoulder pain
  • Indigestion
  • Tingling or numbness in hands and feet

People who take Nplate® may have an increased risk of developing new or worsening changes in the bone marrow called “increased reticulin”. These changes may improve if you stop taking Nplate® . Your healthcare provider may need to check your bone marrow for this problem during treatment with Nplate® .

These are not all the possible side effects of Nplate® . Tell your healthcare provider if you have any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist.

If you have any questions about this information, be sure to discuss them with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please visit www.Nplate.com see Prescribing Information and Medication Guide for more information about Nplate® .

Debra, chronic ITP patient on Nplate®
“...even though I was diagnosed with something I thought was scary....I kept a positive mind and outlook.”

My journey to ITP diagnosis

It took quite some time for me to receive a chronic ITP diagnosis. It was quite baffling for the medical team to determine exactly what was wrong with me. I didn’t understand much at the time I was in the intensive care unit. I didn’t understand why I kept receiving platelet transfusions, yet my platelet levels never went up. The doctors were trying to figure this out as well. At the time, all I really understood was that my platelets were extremely low. Read More

The Share Your
Journey program

People often find it comforting and inspiring to hear about others with similar experiences. We want to hear your story. To join the Share Your Journey program for people with chronic ITP, just call toll-free 1-888-293-1964.
Kristen, chronic ITP patient on Nplate®
“When I was at my wits’ end, my [ITP community support] group was there for me.”

My ITP community network

I was diagnosed with chronic ITP in the winter of 2010. Even though I had never heard of this condition and wanted to find out more, I initially avoided the Internet. I knew that the Internet can be full of misinformation when it comes to medical problems.

We tried several treatments including steroids and intravenous immunoglobulin (IVIG). None of the treatments were effective in helping me achieve my treatment goal, so my hematologist recommended a splenectomy. This concerned me, so I decided to research what other options were available to me. I finally turned to the Internet while searching for answers and came across the Platelet Disorder Support Association (PDSA). I particularly liked the firsthand experiences of others with ITP that I could read about on the discussion boards.

The uncertainty with ITP can lead to negative repercussions in your life from worry and anxiety. No one quite understands what it is like to live with this condition unless they have experienced it. By far my biggest support through this journey has been my husband Dan. Dan spent countless hours researching splenectomies, Nplate® and various other forms of treatment that were recommended to us. He went with me to my doctors’ appointments, which included visiting seven hematologists and two rheumatologists. He regularly consulted two of our friends who are doctors for advice, and we spent a lot of time praying together with friends from our church.

Although I wish I never had ITP, I am grateful for all the support I have had on this journey and I hope I can now be a support to others.