Hospitalized and Treatment Moving Fast

I am on N-Plate. Platelet wise, it has been great. I have been on for about 3 months. I started with about a 5K, I went up to 25K, and since then the lowest I've been is 77K. I do have to say that I suffer from a lot of fatigue since being on the drug and it is a pain going in every week for the blood test/ shot, but you have to weight the pros and cons.

Great news to report, after 48 days my dad has been discharged from the hospital. He had his first injection of Nplate last week (dosage of 2.5 mcg/kg). His count started at 1 the following day then 1,2,3,5,13, and today 22. His symptoms of bleeding, blood blisters and petechiae have stopped. He had his second injection today and will get to enjoy a weekend out of the hospital before returning for a CBC check in the clinic on Monday. Attached is a graph of his hospital time, showing the platelet response from his various treatments.

I want to thank everyone on the forum for all of their assistance and advice. You all are a big reason why he still has his spleen and helped educate us on the Nplate. At least we are past this first phase and hopefully he will continue to improve.

As people consistently advise on the forums, get educated and be your own advocate. Many doctors will push for splenectomy right away, as they did in my fathers case. That may be the right move for some people, but definitely not for everyone. The current guidelines recommend a minimum wait of between 6 weeks to 6 months before considering splenectomy for a reason. In my dad's case the hematologists did not have a lot of experience with Nplate and Promacta.

Cheers,

Michael

That's great news, Michael! I hope he becomes stable and can move on with life soon!

That is Great!!!!!! Like the chart..

I keep a graph like that for my counts too. It's interesting to see the ups and downs. If the doctors aren't experienced with Nplate they may try to get him to have a normal count but the idea is to get a count of around 50 to 100. A high count with Nplate can result in clotting as all the platelets are new and large and therefore good and sticky and you don't want too many of them. As he goes on he may find that he gets more responsive to the drug and needs to reduce the dose, many of us find that.

Just wanted to update on my dad. He is still doing well and his platelet levels continue to climb. He's been out of the hospital for almost 2 weeks now. He's in the 200's and we are going to follow-up on reducing the dosage (he's at 2.4mcg/kg a 250mcg bottle).

Here's dosing recommendations I found from Tuffs, does anyone have any different experience with dosage?

Dosing Recommendations:
Initial:
• 1 mcg/kg subcutaneously once weekly
Dose Adjustments:
• Adjust weekly dose by increments of 1 mcg/kg to achieve and maintain a platelet count ≥50 as necessary to reduce the risk for bleeding.
• If the platelet count is < 50 increase the dose by 1 mcg/kg.
• If platelet count is > 200 for 2 consecutive weeks, reduce the dose by 1 mcg/kg.
• If platelet count is > 400 do not dose. Continue to assess the platelet count weekly. After
the platelet count has fallen to < 200 resume Nplate at a dose reduced by 1 mcg/kg
• Discontinue Nplate if the platelet count does not increase to a level sufficient to avoid clinically
important bleeding after 4 weeks of Nplate therapy at the maximum weekly dose of 10 mcg/kg

Here also is an updated graph of his response.

The dosing recommendations are different in the UK. I have no idea why but they were changed last year. So ours says over 150 twice then reduce the dose and over 250 don't use until the count drops below 150.

www.medicines.org.uk/EMC/medicine/23117/SPC/Nplate+with+Reconstitution+Pack/

I am a bit overcautious I know but a count of over 200 would worry me and I'd be stopping until the count fell.

I wanted to post another update. It's been almost 3 months since the start of my father's ITP. He's been out of the hospital now for about a month. He has been very responsive to Nplate treatment, starting at 2.4mcg/kg, dropping to 1.5 mcg/kg, and the last two weeks his levels have been too high and he has not received injections.

We went down to see Dr. Howard Liebman at USC Medical Center who was recommended by the PDSA. He was excellent, very well versed in ITP, and very helpful with working with my father's hematologist back in the Bay Area. He thought the ITP might have been a T-cell dominate form, and said that they have had good luck with Azathioprine in helping to induce either temporary or partial remissions in people with T-cell dominate ITPs.

We'll keep our fingers crossed and see how he continues to respond to the Nplate. See an updated graph below.

Thanks for sharing the update! Curious why Dr Liebman thought it was "T-cell dominate", what were his clues? I think I might understand what T-cell dominant means but if he gave any explanation I would be very interested.

Is your father taking aspirin or anything to prevent clots with the high count? Another patient who sees my doctor had 3 doses of nplate and also got high counts. She quit getting the injections and counts stayed in the normal range. Shes been in remission 2 years now. best of luck!

Posey, he hasn't been taking anything else, although Dr. Liebman thought it was important to get him back on blood pressure medication.

Dr. Liebman's second opinion indicated starting Azathioprine (Imuran), and my dad is going to start this. In Dr. Liebman's experience about 1/3 of those with ITP and my father's response pattern have a partial remission on Imuran, and about 1/3 have a permanent remission. I believe the T-cell dominant hypothesis is because of his lack of response to Rituxan (B-Cell suppressor) and steroids.

Our experience was that the Oncology/Hematology department where my father was admitted had very limited experience with ITP. Dr. Liebman confirmed this with his review of the treatment steps. It was only once we got the 4th member of the department with a greater background in hematology assigned to my dad that the treatment got on the right track.

My dad has been extremely responsive to Nplate, often skipping dosage as his levels spike, they have him down to 1.0 mcg/kg. It has also been very well tolerated with no visible side effects. Dr. Liebman said in his experience Nplate has been very well tolerated, with headaches being the main possible side effect.

See the newest graph below.

I just wanted to post an update about my dad who had a sudden onset of ITP last thanksgiving, almost a year ago now ( read the previous saga on the forum thread here )

He had a sudden onset of ITP with bloody nose and platelet level down to 1. He was treated with IVIG, Prednisone, Rituxan, daily platelet transfusions and finally Nplate during a hospitalization that lasted 7 weeks. Following the discharge from the hospital he was treated with Azathioprine and Heparin (in the form of injections of Lovenox for a minor blood clot in his leg)

That's a lot of drugs, but the good news is 9 months after he was discharged he not taking any drugs and his platelet levels are stable in the 200's. A specialist who we saw at USC medical center diagnosed him as T-cell dominate and the hypothesis is that the combination of Nplate and Azathioprine may have induced a remission. According to the specialist there's a 1/3, 1/3, 1/3 breakdown for patients who follow this regimen. A third show no improvement, a third have a temporary remission and a third have a permanent remission. So it looks like he is in one of the latter two camps.

A few takeaways:
Everyone is different when it comes to ITP, but here were some lessons we learned-

-See a specialist: Most Oncologist/Hematologists are 95% oncology and 5% hematology. Most likely the best bet for a specialist is going to be your nearest teaching hospital.

-Be your own advocate: If we hadn’t he wouldn’t have a spleen right now

-The new treatments work: Not necessarily for everyone, and not necessarily permanently, but in my dad’s case, Nplate led to a remission.

-Be your own expert: Get involved on the forums (lots of knowledge here), read the blood journal, paper your doctor with articles, whatever you need to do, stick with it.

I'm so happy to hear that! I remember how hopeless you seemed at the time, and your update just goes to show that as bad as it seems, it can and does get better for the majority.

Great advice also!