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.

@lizzy58

Love to know what your appointment outcome will be. I’m sure more tests🙈. But best wishes my platelets are at 20, White Cells also in the Tank🙈

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Thank you, i will let you know.
our major concern is that this could be related to his fight with Melanoma Stage 3C 8 years ago.
have you been given a diagnosis
yet?
how long have you been dealing with this?
best wishes, Cathy

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@loribmt

Hi @cathy07, I’d like to add my welcome to Mayo Clinic Connect. This is a really helpful community where you can meet others who share the same ITP (Immune Thrombocytopenia Purpura) blood condition. It helps to feel you’re not alone, does it? And it’s so beneficial to chat with others who are going thought a similar experience.

@colleenyoung replied to your comment yesterday about ITP in this active discussion group where she introduced you to a few other members who also have ITP. Here’s the link in case you didn’t see it.
Immune Thrombocytopenia Purpura (ITP): What Helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
You’re already keeping in touch with just being in the forum. 😊
If you’d like to reply directly to a member who’s comment you read, simply make sure you use their @name in the comment like I did by adding your name, @cathy07. Then the person will get a notification.

Or, when responding to a comment you just read and you want to direct your reply to the person who posted it, click the blue Reply button. Then type your response in the box and press the black reply button to send. That will direct the reply to the person who posted.

Do you remember who you wanted to direct this comment to? “ I have ITB and would like to keep in touch with you. I just joined and am not sure how to keep in touch.”.

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Thank you so much.
I am taking my husband back to hematologist, Oncologist tomorrow for bone marrow biopsy results.
He was hospitalized last week and received a blood transfusion.

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@cathy07

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

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Hi,
I would love to keep in touch with you as well.
I am pretty low tech.
taking my husband to Hematolgy, oncologist tomorrow.
we haven't gotten a diagnosis yet.

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I developed ITP (Immune thrombocytopenia) over the past 6 months. I have contacted the Mayo Clinic (Rochester MN) in the past 2 weeks. A year ago my platelet count was 245. Now I am down to 70 and I need a aortic valve replacement. I have become really stressed out. My aortic valve is leaking badly (regurgitation). I have had 15 CBC tests (weekly) - everything normal except my platelet count. I have had a bone marrow test/aspiration, again it has come back perfect (no cancers) and am making plenty of platelets. All tests are perfect. I have been tested for additional items and every test is normal. The Mayo clinic received many of my tests and records this week. I live in Florida in the winter but live in Minnesota during the summer. My hematologist currently has me on 50mg of prednisone / day and it has not helped at all and this week they are trying Promacta on a 2 week trial.

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@loribmt

Hi @denisemarys Happy New Year and welcome to Mayo Clinic Connect. Yes, indeed, you are in a perfect group for your thrombocytopenia. Low platelets, as you discovered, can lead to some serious issues in the lack of clotting.

Here’s a little informational article from the Mayo website on Thrombocytopenia: symptoms, how to diagnose and treatments.
https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293
It would be a very good idea to have an appointment with a hematologist. They specialize in blood disorders. It may be you had a one-off event where your platelets were low before surgery. But it’s important to find out if this might be a chronic condition for you.
When is the last time you had bloodwork? What was your platelet level…do you know the level has be trending lower over time?
Do you have any other symptoms such as bruising easily or prolonged bleeding from cuts?

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Thank you very much for your response. It is very helpful.
I've had thrombocytopenia for at least 10 years. My platelets are described as fewer than normal, and larger than normal. I need to look up the results of my blood work and compare them over time. I was told to get an early booster vaccine for COVID-19 because I have thrombocytopenia. I bruise very easily. I haven't noticed a problem with excessive bleeding. I will read the Mayo Clinic post you recommended.
Thank you again for taking the time to answer me.
- Denise

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@denisemarys

Happy New Year Everyone - I have thrombocytopenia. I had surgery and needed a blood transfusion, my husband says it was 2 liters. I was told my thrombocytopenia was part of the problem. No doctors have suggested seeing a hematologist. Is this a good support group for me? Should I be doing something with a hematologist? Thank you in advance for your advice. - Denise

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Hi @denisemarys Happy New Year and welcome to Mayo Clinic Connect. Yes, indeed, you are in a perfect group for your thrombocytopenia. Low platelets, as you discovered, can lead to some serious issues in the lack of clotting.

Here’s a little informational article from the Mayo website on Thrombocytopenia: symptoms, how to diagnose and treatments.
https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293
It would be a very good idea to have an appointment with a hematologist. They specialize in blood disorders. It may be you had a one-off event where your platelets were low before surgery. But it’s important to find out if this might be a chronic condition for you.
When is the last time you had bloodwork? What was your platelet level…do you know the level has be trending lower over time?
Do you have any other symptoms such as bruising easily or prolonged bleeding from cuts?

REPLY

Happy New Year Everyone - I have thrombocytopenia. I had surgery and needed a blood transfusion, my husband says it was 2 liters. I was told my thrombocytopenia was part of the problem. No doctors have suggested seeing a hematologist. Is this a good support group for me? Should I be doing something with a hematologist? Thank you in advance for your advice. - Denise

REPLY

Love to know what your appointment outcome will be. I’m sure more tests🙈. But best wishes my platelets are at 20, White Cells also in the Tank🙈

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@cathy07

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

Jump to this post

Hi @cathy07, I’d like to add my welcome to Mayo Clinic Connect. This is a really helpful community where you can meet others who share the same ITP (Immune Thrombocytopenia Purpura) blood condition. It helps to feel you’re not alone, does it? And it’s so beneficial to chat with others who are going thought a similar experience.

@colleenyoung replied to your comment yesterday about ITP in this active discussion group where she introduced you to a few other members who also have ITP. Here’s the link in case you didn’t see it.
Immune Thrombocytopenia Purpura (ITP): What Helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/
You’re already keeping in touch with just being in the forum. 😊
If you’d like to reply directly to a member who’s comment you read, simply make sure you use their @name in the comment like I did by adding your name, @cathy07. Then the person will get a notification.

Or, when responding to a comment you just read and you want to direct your reply to the person who posted it, click the blue Reply button. Then type your response in the box and press the black reply button to send. That will direct the reply to the person who posted.

Do you remember who you wanted to direct this comment to? “ I have ITB and would like to keep in touch with you. I just joined and am not sure how to keep in touch.”.

REPLY
@cathy07

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

Jump to this post

ITP

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