So, got a surprise. My platelets dropped to 358 from 408 in 8 days, so surgery apparently dropped the platelets, since this was supposed to be my peak platelets, in my cycle. I did take Resveratrol last 4 days, though. This article shows that the platelets can drop, also, during/after surgery;

pmc.ncbi.nlm.nih.gov/articles/PMC7042990/#:~:text=Normal%20platelet%20count%20changes%20during,to%20surgical%20hemostasis%20(Figure%201) .

I was afraid of high platelets, so I guess its good news. Being off the danazol may not have been the right guess for my doctor, though. My surgeon actually said it was ok to continue it, but I had to go with the prescribing hematologist, that's the way it goes...

I was diagnosed with ITP approximately 5 years ago. Initial treatment with steroids up to 80 mg of Prednisone provided no relief so my hematologist started me on Rituximab which also had no effect. My count dropped to 6000 so I was hospitalized and received Ivg which temporarily raised my counts. I then started with Plate at 1mcg/kg moving as high as 3 mcg/kg before my counts reached 200,000 plus for three consecutive CBC's. The dosage was reduced to 2 mcg/kg and then eventually 1 mcg/kg where I have been for the last approximate 4 years. My counts fluctuate between 95,000 and 225,000 with weekly injections based on monthly CBC's. 

At this point, I have resigned myself to the fact that I will be on Plate for the rest of my life but I was hoping someone could provide their thoughts regarding their experiences with alternative treatments. The need to have a weekly injection restricts me from traveling and now that I am finally retired I would love to find something to provide me with some flexibility i.e. an oral medication. I would greatly appreciate all information regarding alternatives including side effects.

Thank you for taking the time to respond.

While you're considering alternatives to Nplate, I would lower the dose, since that is generally what is recommended. In other words, you don't want "normal" platelet counts. That is how the game is played, anyway. 

You are close though. They recommend over 50 and under 200. 

You should consider switching to an oral TPO receptor agonist, particularly avatrombopag. It offers efficacy comparable to romiplostim without weekly injections and has fewer dietary restrictions than eltrombopag.

9 May 26 - 151
9 Jun 26 - 177

The combination of medical treatment starting from 15 June 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 mg)
b. Azathioprine -  25 mg daily
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

MelA wrote: Hi drbean,  It's good to see you, are you still in Hong Kong?  Your platelets look great - are you feeling
good?

Hi MelA, thank you for your reply.

I am sorry for my late reply.

I am still in Hong Kong and have been extremely busy with work, often working at least 12 hours a day for more than 7 years, including overtime on Saturdays or Sundays and public holiday.


By the time I leave the office each day, I am exhausted. I usually only sleep around five hours before going back to work again.

I am also very worried about reducing the dose of my medical treatment. I feel that one wrong step could undo more than seven years of effort and progress.

Thank you for your understanding.

Good to hear from you drbean!  You have one heck of a work schedule, I don’t know how you do it!  I wish there was a way you could cut back on your hours even a little bit, sounds like you need to go stretch out on the sand at Repulse Bay and relax (been a while since we lived in HK so I’m assuming it still is nice).   Your count went up again!  You know what is best for you and that is what you are doing & it is working.  Just be good to yourself!
Melinda

I know this is old, but whatever... It could fit someone's situation now. In fact it can take a person 10 years to realize they have cyclic thrombocytopenia, for that matter. 

This is up my alley for the cyclic thrombocytopenia, but I'm male. But yes, periods and cycle are expected to go together often with females and cyclic thrombocytopenia. 

And, don't expect hematologists to know anything regarding any of this. This is what I have found. Diagnosed myself after a year, and couldn't even get the first doctor to respond to the evidence. Second doctor had never heard of cyclic thrombocytopenia, but at least proved that I had it by taking me off of any drugs. Since my cycle performed beautifully on its own. 

My third doctor almost stopped a surgery, even though he should have known my platelets were raising. I was at 400 by the time of the surgery, but it came down to the last day to get the ok. I knew my platelets were fine. 

What's wrong with this picture? When you know what you're doing, you just need a doctor to stay out of the way. You mostly just need the doctor for the blood tests and the drugs. And hopefully keep track of how your liver, etc. is handling the drugs. 

Has your doctor done testing to confirm your spleen is where your platelets are being destroyed? The last time some one suggested that to me was over 20 years ago when I had gestational ITP.  I’ve had chronic ITP for 12 years (without intervention my platelets are in single digits) and recently switched hematologists to one that specializes in immune based blood issues. The amount of information that has been uncovered and amount of medicines that have developed in the past few years is amazing. Have you asked for a second opinion?

Ah, using radioactive indium 111 to tag platelets and see where they go...

If you have ITP or a platelet disorder, be cautious with green tea, reishi mushroom, and cordyceps extracts as they may affect blood clotting and the immune system. Green tea extract: May reduce blood clotting ability at high doses and interact with ITP medications. Reishi mushroom: Has antiplatelet effects, which may increase the risk of bruising or bleeding. Cordyceps: May prolong bleeding time and affect immunity. People with ITP should consult a hematologist before using these concentrated extracts to avoid unwanted risks. Among Us