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

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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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@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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@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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Hello all, I have been dealing with a very low platelet count for the past year now, currently at 11,000. Been on prednisone and when at 50 Mg count has gone up as much as 140 but very time the dosage is lowered count goes down significantly. My platelet count was 340,000, got COVID shot then 30 days later developed bruising and blood test revealed platelet count at 19,000. A year later prednisone seems to be losing its affects and count not going up. Dr is starting me on Rituxmab next week. 4 -8 weeks. As of today I'm developing symptoms i never had before such as blood in my nose and on the white of my eyes. Getting nervous. Dr didn't seem alarmed at my count of 29 so just waiting the week until i start the Rituxmab. Hoping someone has had similar experience and the Rituxmab worked. I was 48 and perfectly healthy before i got the vaccination, Now a year later i was forced to retire and getting worse

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@wayne80for7

Hello all, I have been dealing with a very low platelet count for the past year now, currently at 11,000. Been on prednisone and when at 50 Mg count has gone up as much as 140 but very time the dosage is lowered count goes down significantly. My platelet count was 340,000, got COVID shot then 30 days later developed bruising and blood test revealed platelet count at 19,000. A year later prednisone seems to be losing its affects and count not going up. Dr is starting me on Rituxmab next week. 4 -8 weeks. As of today I'm developing symptoms i never had before such as blood in my nose and on the white of my eyes. Getting nervous. Dr didn't seem alarmed at my count of 29 so just waiting the week until i start the Rituxmab. Hoping someone has had similar experience and the Rituxmab worked. I was 48 and perfectly healthy before i got the vaccination, Now a year later i was forced to retire and getting worse

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Hi @wayne80for7, did you start rituxmab? How are you doing?

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I have been dealing with a low platelet cont for the past two years my doctor tells me that they don't know what the cause of my ITP is. Started out with infusions and moved to promacta when that didn't work I started receiving weekly injection shots. As of November 15 my platelet count was at 8000 and fluctuates every time I see my oncologist. This is very frustrating not knowing what in the world is going on with my body.

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@newmoonsabbath

I have been dealing with a low platelet cont for the past two years my doctor tells me that they don't know what the cause of my ITP is. Started out with infusions and moved to promacta when that didn't work I started receiving weekly injection shots. As of November 15 my platelet count was at 8000 and fluctuates every time I see my oncologist. This is very frustrating not knowing what in the world is going on with my body.

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Hi Mary, that does sound frustrating. I'm sure this frustration sounds familiar to fellow members like @rockitman @hlmcneely @elenarey77 @lulujuice @emcdanie2006.

How long have you been doing the weekly injections? Have you been to see the oncologist since your last reading on Nov 15?

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@colleenyoung

Hi Mary, that does sound frustrating. I'm sure this frustration sounds familiar to fellow members like @rockitman @hlmcneely @elenarey77 @lulujuice @emcdanie2006.

How long have you been doing the weekly injections? Have you been to see the oncologist since your last reading on Nov 15?

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Hi Colleen I have been getting injections for over a year now and I saw the oncologist on the 15th. Tomorrow I go in for blood work and an injection but I really don't expect any big changes although I am hoping to have a better platelet level fingers crossed

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