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.

I was in the hospital in September of 2023 with they told me Ischemic Colitis was there for 3 days and sent home. Two days later my husband took me to another hospital in Jackson,Ms they said I had a blood clot in my upper colon restricting the blood flow that’s why I was having severe stomach pain and bleeding from the rectum. I had two stents done in April of 2023 they found a blood clot in the stent in my lower addomin. Then 2 days later they found two more blood clots in my right arm one in Basilic Vein and one in the Cephalic Vein. Was in the hospital for 8 days that time. Was put on Elaquis 5mg 2x a day. Then in December was taken back to the hospital having an allergic reaction to my Ladinapril and bleeding from the rectum again. Had another blood clot in my left leg. This time they installed a IVC filter. Was there this time for 4 days. Went to a hematologist/ oncologist he done a lot of blood work. I have still been seeing the hematologist/ oncologist he told me on the May 15,2024 I didn’t have a blood disorder but would be on a blood thinner more than likely the rest of my life and I did not have a blood clotting disorder and he had no answer for me as to why I had a total of 5 blood clots. In 3 months. He has scheduled me for a Iron infusion on June 10,2024. I have told him my mother had blood clots really bad she was on Coumadin then on Warfarin. I am looking for a doctor who can tell me what is triggering the blood clots in me. And help get me some answers to why I am having blood clots all of a sudden when I have never had any until September of 2023. The Mayo Clinic has been recommended to me I just hope to get some answers.

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Sharing this in case may help in the diagnosis for someone else.

My dog was favoring a leg for the second time so it was Vet time. When the Vet did not feel a physical cause, she proceeded in the next logical manner for the area I live in - testing for Lyme disease. My dog tested positive for that and for another tick borne illness- anaplasma. And since her water intake has increased, a CBC was run. Instead of her platelets being in the 175,000 to 500,00 range, hers is 37,000 (dangerously low). And one of her liver enzymes is elevated. I don't know how often human doctors think to test for tick-borne diseases but Vets sure do (at last here they do). Now doxycycline to the rescue.

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @nana39,
I see from your posts that you are experiencing quite a few symptoms related to your blood levels and that you and your doctors are working hard to get to the root cause to find appriate treatment. Treatments for thrombocytopenia are dependent on the root cause.

To help you connect with fellow members like @rockitman @denisemarys and others who have varying forms of thrombocytopenia - condition where the body makes too few platelets - I moved your question to this existing discussion:

- Low Platelets: Diagnosis to be confirmed https://connect.mayoclinic.org/discussion/low-platelets-1/

As @diana6 said, anisocytosis means there are red blood cells unequal in size in your blood results. These unequal cells may be related to your other symptoms and what ever is causing your blood condition. What did your doctors explain to you? What treatment options are being suggested?

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Hello
I had low platelets and low blood cell counts, white, red, platelets, hemoglobin, etc.
I was diagnosed with Aplastic Anemia.
I am being treated by Moffitt cancer ctr in Tampa Fl.
Currently I have all normal blood cell treading with the exception of red blood cells, but they are at 3.07, s/b 3.70.
My platelets are now 184k
They were below 10k in March 2023.
I take Cyclosporin and Promacta every day to help my blood cells stay close to normal.
My treatment is ATGAM AND then Cyclosporin & Promacta the treatment for Aplastic Anemia.
Best of luck in finding the right Dr. And the right treatment.
You are your own advocate for your health.

Rockitman

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Profile picture for nana39 @nana39

Does anyone have thrombocytopenia and anisocytosis?
What treatment are you on?

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Hi @nana39,
I see from your posts that you are experiencing quite a few symptoms related to your blood levels and that you and your doctors are working hard to get to the root cause to find appriate treatment. Treatments for thrombocytopenia are dependent on the root cause.

To help you connect with fellow members like @rockitman @denisemarys and others who have varying forms of thrombocytopenia - condition where the body makes too few platelets - I moved your question to this existing discussion:

- Low Platelets: Diagnosis to be confirmed https://connect.mayoclinic.org/discussion/low-platelets-1/

As @diana6 said, anisocytosis means there are red blood cells unequal in size in your blood results. These unequal cells may be related to your other symptoms and what ever is causing your blood condition. What did your doctors explain to you? What treatment options are being suggested?

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Anisocytosis is prominent in iron deficiency anemia and is a condition where the red blood cells are unequal in size. Yes bloodwork showed 2+Anisocytosis alomg with all kinds of abnornal results,I was perfectly healthy before I got the Covid 19 vaccine mRNA .

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Does anyone have thrombocytopenia and anisocytosis?
What treatment are you on?

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Profile picture for auntkk @auntkk

@lulujuice
Thank you for your reply. I do have some good news on my husband's latest (4/25/23) blood test. His platelets went up to 66 from 46 on the previous test. Of course, he still needs a higher count, but this is an improvement! We continue to believe in prayer!

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Such great news! PTL🙏🙏🙏

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Profile picture for lulujuice @lulujuice

Good morning auntkk,
I remember the Dr”s call to go to the ER! I hope your husband has gotten some answers. I’ll pray that COVID has not caused any continual complications and that these low platelets issue is resolved quickly. God bless!

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@lulujuice
Thank you for your reply. I do have some good news on my husband's latest (4/25/23) blood test. His platelets went up to 66 from 46 on the previous test. Of course, he still needs a higher count, but this is an improvement! We continue to believe in prayer!

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Profile picture for auntkk @auntkk

Oh, I pray that you're problem is "one & done" for sure! Thanks for that info. These blood problems are new to us, but I read what I can to learn about it. My husband has always been pretty healthy with the exception of knee replacements & an episode of melanoma on a mole on his arm, where he had Mohs surgery to remove it. Per the doctors, this ITP came a few months after covid at the end of Dec 2022. Believe me, we had no idea that his platelets were at 1,000 until the PCP dr called to tell him to get to ER immediately. We pray this clears up & goes back to normal so he won't have to take major meds.
Thank you for responding back to me. God bless & trust that you get totally healthy.

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Good morning auntkk,
I remember the Dr”s call to go to the ER! I hope your husband has gotten some answers. I’ll pray that COVID has not caused any continual complications and that these low platelets issue is resolved quickly. God bless!

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Profile picture for rockitman @rockitman

auntkk
I have since been diagnosed with Aplastic Anemia and have been treated with ATZ , cyclosporine and Promacta.
(Treatment started February 1-5, 2023) All my blood levels crashed shortly after being told I had ITP only.
The treatment appears to be working after receiving the ATZ, Cyclosporine and Promacta.
After 9 weeks my blood count levels started to raise. My blood test results are starting to go into the normal range with Platelets rising from 12k 3 weeks ago to 87K, WBC from 1.8 TO 5.3, hemoglobin from 7.4 to 10.8, RBC from 2.1 to 2.8, neutrophils from 0.3 to 3.18. Hoping for continued improvement.
You are your best advocate for your health, find a competent Dr. I went through 3 Dr's before I even got a diagnosis. I would not wait 5-6 months for another blood test. It only took 2 months for my blood cell levels to tumble below normal.
In November I was given Rituximab, Prednisone and Promacta but there was no change in my blood cells or Platelet levels. Platelet transfusions only last 3-4 days. Platelet levels below 10 are critical and below 5 can be fatal if you get a brain bleed. You need weekly blood tests (CBC) to monitor Platelet levels and blood cell levels.
You need a definite diagnosis. I had two bone marrow aspirations and bone biopsies. It took the right Dr to determine my diagnosis.
My current Dr is exceptional, but I had to keep searching till I found a Dr with the knowledge I needed to find my diagnosis. She was at Mayo but is now at Moffitt in Tampa.
Good Luck, best wishes for a recovery and treatment.

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@rocketman
Thanks for your info. Other than my husband's platelets, all the other blood test results have always remained normal. Due to shortness of breath & fatigue he had a stress test this week & thank God, his test result is good. He'll get another blood workup on the 25th, then monthly if this one is better than 46. We're believing he'll continue to improve, & of course, we'll move ahead if necessary.
Thanks for listening to me! I keep digging for info!

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