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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

cathy07 | @cathy07 | Dec 31, 2022

In reply to @loribmt "What’s unusual is that your platelets are low and yet you’re getting blood clots. So what..." + (show)

Thank you for posting this link.

cathy07 | @cathy07 | Dec 31, 2022

I have ITB and would like to keep in touch with you. I just joined and am not sure how to keep in touch.

Lori, Volunteer Mentor | @loribmt | Dec 30, 2022

In reply to @tongannokie "I had a bone marrow test and it came back normal. He took me off of..." + (show)

What’s unusual is that your platelets are low and yet you’re getting blood clots. So what few platelets you have seem to be ‘sticky’, enabling the clots to form.
Has your hematologist done any further testing such as a genetic test to look for mutations?
The National Institute of Health~ National Heart, Lung & and Blood Institute has some good information on platelets…high and low, possible causes and treatments for both conditions. There are several pages so make sure to read all the way to the bottom. A new link with an arrow will take you to Treatment, Causes and Risk factors, Treatments.
https://www.nhlbi.nih.gov/health/platelet-disorders/diagnosis
Steroids can help increase platelets but they also have side effects with long term use. It will be interesting to see what your next round of blood work shows. I’d like to follow along with you on this journey. Do you mind if I check back in with you later next week?

tongannokie | @tongannokie | Dec 30, 2022

In reply to @loribmt "Hi @tongannokie, You’re not alone in having low platelets. There are a number of members in..." + (show)

I had a bone marrow test and it came back normal. He took me off of xaralto because he said if my platelets are below 50 I should not be taking xaralto. He wanted me on steroids but my body does not handle steroids. However he put me on dexamethasone. So I am on that for 4 days. I am to have my blood tested on Wednesday. My hemoglobin is 12.5 and platelets 22.

Colleen Young, Connect Director | @colleenyoung | Dec 30, 2022

In reply to @tongannokie "So I have a situation where my body doesn't make platelets. They keep going low and..." + (show)

Hi @tongannokie, I moved your message about low platelets and followup to this recent discussion:
- Low Platelets: Diagnosis to be confirmed: https://connect.mayoclinic.org/discussion/low-platelets-1/

I did this so you can read the previous helpful posts and connect easily with members like @rockitman @tyson1221 @loribmt @elenarey77 @kristiann1123 @hlmcneely and others who can share their experiences.

Lori, Volunteer Mentor | @loribmt | Dec 30, 2022

In reply to @tongannokie "So I have a situation where my body doesn't make platelets. They keep going low and..." + (show)

Hi @tongannokie, You’re not alone in having low platelets. There are a number of members in our forum who also have similar issues. Some have a confirmed diagnosis as to what’s causing the lack of platelets and others are like you, where they’re wondering why and what to do about it.
I think this discussion would be most fitting for you right now so here’s the link to:

“Low Platelets: Diagnosis to be confirmed”…where you’ll meet other members, @tyson1221, @rockitman @renee12345, @hlmcneely who may have suggestions or useful information for you.
https://connect.mayoclinic.org/discussion/low-platelets-1/?pg=4#comment-778606
I just have to ask, knowing your situation, why did your hematologist take you off the Xaralto? Have you had further bloodwork drawn to have an actual diagnosis for your bone marrow failure to produce platelets?

tongannokie | @tongannokie | Dec 30, 2022

So I have a situation where my body doesn't make platelets. They keep going low and low right now they are 22. AND I have had trouble with blood clots since I was a teenager and have been told I will be in blood thinner all my life. So I have to take xaralto. However, my hematoligist took me off xaralto and 2 days later I have a femoral clot. Any idea?

Colleen Young, Connect Director | @colleenyoung | Dec 1, 2022

In reply to @renee12345 "I cannot find my message in the section where you said it moved to. How do..." + (show)

Hi Renee, here is your original post https://connect.mayoclinic.org/comment/778606/

renee12345 | @renee12345 | Dec 1, 2022

In reply to @colleenyoung "Welcome @renee12345. You might also be interested in this related discussion: – What can I expect..." + (show)

I cannot find my message in the section where you said it moved to. How do I locate it?

renee12345 | @renee12345 | Dec 1, 2022

Thank you, I appreciate that!

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