Starting Promacta - how often should I go for blood test

Hi everyone. I enjoy reading your posts. I was diagnosed with ITP 5 years ago and like most people, it has been a roller coaster ride. After completing my third round of Rituxan last month and a platelet count of just 16K, my oncologist/hematologist had me try 50 mg. of Promacta. After just one month, my count rose to 217K. I have an appointment with my doctor in 4 weeks, and another blood test will be performed. My question is should I wait that long or have a blood test in 2 weeks? I'm happy my count rose, but I don't want it to spike too high for fear of blood clots. Any suggestions/thoughts appreciated.

UK guidelines are weekly platelet counts for at least first 4 weeks. Then monthly once platelet count is stabilised between 50-150 . They also state if count over 150 dose should be reduced

stlrob,

Your "timeline" is a little unclear, but as best I can tell you are about 7 weeks out from your first Rituxan treatment. This is well within the window of when you might get a response, so there is currently no way to determine how much your response is to Rituxan and how much to Promacta, or what additional response you might have to Rituxan. It is possible that the Rituxan might kick in and increase your platelets even higher. In light of the fact that you are taking Rituxan and Promacta as overlapping treatments, I would suggest that you proceed cautiously.

Novartis recommends regular monitoring during the dosage adjustment stage, consisting of weekly blood counts and biweekly liver tests.
At 217k, the guidelines say you should be reducing the dosage by 25 mg. Use the lowest dose of PROMACTA to achieve and maintain a platelet count greater than or equal to 50 x 109/L.

www.hcp.novartis.com/products/promacta/chronic-immune-idiopathic-thrombocytopenia/dosing-administration/

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Stlrob wrote: Hi everyone. I enjoy reading your posts. I was diagnosed with ITP 5 years ago and like most people, it has been a roller coaster ride. After completing my third round of Rituxan last month and a platelet count of just 16K, my oncologist/hematologist had me try 50 mg. of Promacta. After just one month, my count rose to 217K. I have an appointment with my doctor in 4 weeks, and another blood test will be performed. My question is should I wait that long or have a blood test in 2 weeks? I'm happy my count rose, but I don't want it to spike too high for fear of blood clots. Any suggestions/thoughts appreciated.

Hi Stlrob!

I'm a fellow Promacta user, so I can give you my impressions from my experiences.

First, it looks like you may have jumped in with Promacta before fully determining whether the Rituxan was doing anything for you. Some people have said that it has taken as long as 10 or 12 weeks for them to start to see an increase in counts. If I'm reading your message correctly, you started the Promacta after only waiting 4 weeks? That seems a bit premature, so I'd be wondering what my hematologist was thinking if she was moving on to another treatment without fully trying the one before.

Regardless, when I first started Promacta (at 50mg, which is the standard starting dose), I was doing weekly counts to see when/if I was getting any benefit. For me personally, I didn't see any response at 50mg after about 4 weeks, so we increased my dosage to 75mg. I finally got a response at that dosage. For quite some time I was doing weekly blood tests to make sure that my count wasn't spiking too high. A few times I got slightly above 100k, which made me VERY nervous, because I'm scared of clotting and don't have a spleen!

Frankly, at 217K, I would be talking with my doctor about decreasing my dosage yesterday to get the count down. That is quite high and the recommended "target count" on Promacta is 50K. I would definitely NOT be waiting another month, during which my count could be skyrocketing with the effects of the Promacta as well as potentially having the Rituxin kick in as well. Good luck and I hope that you can work with your doctor to get your numbers at a safe, lower level!

Keep us posted

Hello Stlrob, and welcome. Curious, how did your second round/treatment/volley of Rituxan go? Also, was it over a year ago?

Thanks everyone for your responses. I spoke with the nurse at my doctor's office today, and the doctor thinks it's a good idea to get a blood test at 2-week intervals rather than wait until my appointment in 4 weeks. I only wish he would have suggested this first without me having to contact him. I've been with him for 5 years, but I'm thinking of switching to a new hematologist.
To clarify what I originally wrote, I started my third round of Rituxan in November 2016 and finished the last infusion on December 2. My platelet count a week after the last treatment was 16K. Note that after my first round of Rituxan in July 2012, my count was around 165K and stayed within the normal range for 2 and 1/2 years. It dropped to around 20K in December 2015 and the doctor started the second round in January. My count rebounded to 137K but dropped last August to 17K. It stayed low for the next 3 months, which is why he started the 3rd Rituxan treatment.
Since I didn't respond quickly the third time, he switched to 50mg. of Promacta, which I starting taking in mid-December. As I stated previously, my platelet count jumped to 217K.
I agree with everyone that he should have waited a little longer to see if I responded to the Rituxan. My concern is that my counts go too high, which is why I will go for another blood test in a week. Personally, I would rather not take any medications as long as the counts aren't too low. Even when they were just 16K, my symptoms were minimal, and it's far better than risking a blood clot. Thanks again.