Low Platelets: Diagnosis to be confirmed

Posted by rockitman @rockitman, Oct 14, 2022

I have a platelet count of 17 as of Oct 10th 2022. I lose about 800-1000 platelets a day. 5000 - 7000 a week between CBC.
My Dr has me on Promacta 50mg a day(4 weeks), Prednisone 80mg a day, 40mg morning, 40mg night (6 weeks), No help at this point.
Started Rituxan last Tuesday morning Oct 10th 6 hr treatment.
Three more 6hr treatments one week apart every Tuesday morning.
Has anyone had good results with Rituxan?
My Dr has changed my Diagnosis 5 times in as many weeks.
My bone marrow biopsy/asperation lists two possibilities, aplastic Anemia and Megakaryocytic Hypoplasia. He is currently dianosing me with Megakaryocytic Hypoplasia??????
At this point I'm not sure what I have?
I did contact Mayo Clinic and have gotten an Appointment next Wednesday, thank you Mayo.
Does anyone know how long it takes for the Rituxan to work if will even work at all. My Dr said 54 days? I don't have 54 days of platelets left at the platelet loss I'm experiencing now. Getting down to the critical stage, No bleeding yet that I can tell internally but bruising very easily.

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@kristiann1123

My cousin (31 year old female) has had a very low blood platelet count for over 2 months now. She got down to 6k and was hospitalized for 3 days and they are not telling her anything other than it could be chronic or a one time thing. She has taken steroids to boost her levels back up but the moment she stopped, they dropped back down to 26k within a matter of a few days. She has had numerous labs and testing and they aren't fixing her problem and seem to not even have an inkling as to what is really going on with her. Any thoughts or ideas on what we should do next?

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I highly advise a 2nd opinion. Contact an specialist immediately! Have them run an AdamsT13 blood test, it will surely point to iTTP. I was in a coma for 4 days (blood loss) doctors ran every test imaginable- finnaly, an hematologist saw that I had no platelets and started plasma exchange.

Wishing you the best, keep us updated. “praying”

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@kristiann1123

My cousin (31 year old female) has had a very low blood platelet count for over 2 months now. She got down to 6k and was hospitalized for 3 days and they are not telling her anything other than it could be chronic or a one time thing. She has taken steroids to boost her levels back up but the moment she stopped, they dropped back down to 26k within a matter of a few days. She has had numerous labs and testing and they aren't fixing her problem and seem to not even have an inkling as to what is really going on with her. Any thoughts or ideas on what we should do next?

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Welcome, @kristiann1123. I moved your message to this existing discussion that @rockitman recently started.
- Low Platelets: Diagnosis to be confirmed: https://connect.mayoclinic.org/discussion/low-platelets-1/

I did this so you can read the previous posts and connect with members like Rockitman, @loribmt @hlmcneely @elenarey77 @lulujuice @emcdanie2006

Kristian, has your cousin considered getting a second opinion to help find the underlying cause?

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@lulujuice

Hello, I have reoccurring TTP. I have had 4 bouts, the first was in 2009. I was treated with Rituximab (Rituxin) through IV and it is a series of 4 treatments. Prednisone will also affect your blood sugar levels, possibly making them higher so please monitor. I was also treated with plasmapheresis (frozen platelets) to increase my platelets. My body shuts off the Adams T13 enzyme that makes platelets. I am wondering platelets should be between 150,000-400,000. My lowest was 6,000 and below 11,000 there is concern for internal bleeding! So I am confused with you number 17!
I hope you find answers! Blessings always!

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The 17 is 17,000. If you look at your CBC it will not include the thousand.
The CBC will list normal at 140-440. It is actually 140,000 to 440,000.
Hope this explains it better.
Best wishes to you, hope all goes well for you.

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Hope you get results that are good. My energy level drops and comes back I have same diagnosis

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My cousin (31 year old female) has had a very low blood platelet count for over 2 months now. She got down to 6k and was hospitalized for 3 days and they are not telling her anything other than it could be chronic or a one time thing. She has taken steroids to boost her levels back up but the moment she stopped, they dropped back down to 26k within a matter of a few days. She has had numerous labs and testing and they aren't fixing her problem and seem to not even have an inkling as to what is really going on with her. Any thoughts or ideas on what we should do next?

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I was in Mayo yesterday getting my Bone Marrow aspiration. I really don't have any firm diagnosis yet.
I have Myelodysplastic syndrome (MDS) -low grade and Anemia, Hemoglobin has made a big drop in the last few days. Makes me very tired and have minor headaches. I won't have a treatment prescribed until the final biopsy reports are in, two to 10 days. I just went for the quick and easy Biopsy, but it was no problem at all. Also had to get a platelet transfusion while there and also talked with my Dr. for quite a while. If nothing shows up on the final biopsy reports, he seems very optimistic I can get through this with some chemotherapy.
I'll let you know more when I know more.
My best wishes to elenarey77.

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@elenarey77

It turned out I had severe aplastic anemia. My platelet count was at 16. Other cell counts really low too. I was treated with. ATGAM, cyclosporine, and Promacta.
Good Luck and best wishes!

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Hi @elenarey77 Welcome to Mayo Connect! Thank you for sharing your experience with Aplastic Anemia. That’s a very serious disease where the bone marrow isn’t producing blood cells…not just red cells but white blood cells and platelets too, as you experienced. So it’s very positive and encouraging to hear that you’ve had success with the medications!
Will you be on these for life or has it reversed the disease completely?

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@rockitman

Nov 1st@ 8:30am. Jacksonville, FL.
Thanks for the insight and info, as always, a pleasure to hear from you.
I'll let you know how it all goes.
Stay well.

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Hi @rockitman. Thought about you this morning with your bone marrow biopsy. I know it takes several days for all the aspects of the biopsy to get analyzed. Hope it all went well. Did you try the pleasant slumber option? 🙂

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It turned out I had severe aplastic anemia. My platelet count was at 16. Other cell counts really low too. I was treated with. ATGAM, cyclosporine, and Promacta.
Good Luck and best wishes!

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@loribmt

Hi @rockitman. You have to be relieved to have a sound diagnosis and plan joining forward!!
Personally, I’m relieved to know you’re getting regular platelet checks and infusions! Your reserves were getting pretty low. Ok, still no knife juggling but at least now you can relax a little.
Yes on the 2nd biopsy from Mayo. The bmbx (bone marrow biopsy and examination) are incredibly detailed and the equipment used by Mayo is state of the art. Your doctor can ask for specific tests on the cells collected for his purpose. I’m not surprised that a new bmbx is in the offing. And as a veteran of 13 biopsies, my preference is the quick general anesthesia they offer. You’re out about 15 minutes and wake up happy to juice and snack. 😃
That’s for reporting back. When the next biopsy?

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Nov 1st@ 8:30am. Jacksonville, FL.
Thanks for the insight and info, as always, a pleasure to hear from you.
I'll let you know how it all goes.
Stay well.

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