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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@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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@lulujuice

Hello auntkk,
I have TTP and believe it differs from ITP. When my platelets drop it is because my body stops making platelets due to an enzyme shutting down . The enzyme is AdamsT13 that completely shuts down and it is like my body attacks itself not producing platelets. My first episode was in 2009, I have reoccurring TPP since I have had 5 (2009,2014,2016,2018,2022)total episodes. The first time my platelets dropped to 6,000. I was treated with Rituximab x4 and prednisone the first 4 episodes. The Drs usually test for my level of AdamsT13. I also have Plasma Pharisees (frozen plasma exchange) daily while in the hospital. My first hospital stay was 18 days due to platelets up and down. The second time I was hospitalized about 2weeks total after sending me home after a week of treatments I relapsed. The last 3x it has only been about a week stay. This past December I was not treated with Rituxin due to high incident of death related to COVID concerns for being unvaccinated. After the week in the hospital I’ve still continued to have platelets in the 200,000 range. I have been told TTP is usually a one and done thing! Prayers answered🙏 Hope this is helpful. Blessings always, Lou Ann

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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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@auntkk

@rocketman
I just read your post regarding ITP. I realize it was from Oct 2022, but was wondering what your results have been since then. My husband has ITP. He was hospitalized when his blood test gave a platelet count of 1 (one.) Hosp released him when they got count up to 152, but it continued to drop again. He also took the 4 infusions of Rituximab. 3 wks ago it was 36, this wk platelets are 46. He'll continue with blood tests, but his next oncologist apptmt is not until Oct 2023, unless count drops more. This is nerve-racking, to say the least.

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Hello auntkk,
I have TTP and believe it differs from ITP. When my platelets drop it is because my body stops making platelets due to an enzyme shutting down . The enzyme is AdamsT13 that completely shuts down and it is like my body attacks itself not producing platelets. My first episode was in 2009, I have reoccurring TPP since I have had 5 (2009,2014,2016,2018,2022)total episodes. The first time my platelets dropped to 6,000. I was treated with Rituximab x4 and prednisone the first 4 episodes. The Drs usually test for my level of AdamsT13. I also have Plasma Pharisees (frozen plasma exchange) daily while in the hospital. My first hospital stay was 18 days due to platelets up and down. The second time I was hospitalized about 2weeks total after sending me home after a week of treatments I relapsed. The last 3x it has only been about a week stay. This past December I was not treated with Rituxin due to high incident of death related to COVID concerns for being unvaccinated. After the week in the hospital I’ve still continued to have platelets in the 200,000 range. I have been told TTP is usually a one and done thing! Prayers answered🙏 Hope this is helpful. Blessings always, Lou Ann

REPLY

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.

REPLY
@rockitman

Lori
It is so kind of you to get me all this information and tell me about others who have faced this frightening medical issue. I have sent in 29 pages of my current Medical records, Bone Marrow Aspiration, Latest weekly CBC's, Complete Ultrasound, MRI's, etc to Mayo just so they could review my diagnosis to see if they would accept me as a patient. Thats how I was accepted or at least got the call from them that I would be meeting with two Doctors Wednesday morning Video Appointment.
If they need more, I'll be there in two hours.
Question: Did the Rituxan work before your transplant or after? I am scheduled for the 4 treatments, I had one last Tuesday, I had no problems or side effects at all, in fact they finished in less than the prescribed time.
Does the Rituxan provide any signs of working between the treatments that can be seen in your platelet count with the CBC taken before each treatment? My Dr said 54 days after my 4 treatments are finished before he knows if the treatment worked.
My problem is my Dr still has me on Promacta and Prednisone and one of them is causing me to have strong heart palpitations and lower leg swelling. I told him but he doesn't seem concerned. Told me to keep taking all the meds as prescribed. He keeps saying maybe the Promacta will start working.
Hopefully all this will change Wednesday after talking with the Mayo Dr's. I'm losing confidence in my current Dr.
I'm Curious to see if my number has dropped from last week's 17.
You have a blessed day and I'll be thinking of you too during your checkup.
I'll let you know how my Mayo visit goes Wednesday.
Thank you so very much.

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@rocketman
I just read your post regarding ITP. I realize it was from Oct 2022, but was wondering what your results have been since then. My husband has ITP. He was hospitalized when his blood test gave a platelet count of 1 (one.) Hosp released him when they got count up to 152, but it continued to drop again. He also took the 4 infusions of Rituximab. 3 wks ago it was 36, this wk platelets are 46. He'll continue with blood tests, but his next oncologist apptmt is not until Oct 2023, unless count drops more. This is nerve-racking, to say the least.

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@rbsunshine

I’m waiting to get a diagnosis for the last 2 years I’ve been having a hemoglobin issue & low red blood count & low oxygen. The beginning of the year I fainted & my teeth went threw my mouth. I’ve been having kidney stones & surgery. The first ER missed it. I had sepsis & my blood pressure just drops. They had me on wrong meds & I got sepsis again in a week but this time was put on correct antibiotics & Kidney stone was found blocking severely infected kidney. This week I ho to ER due to pain in kidney & infection & stones again. Bloodwork came back with low red & white count low oxygen & liver count high. I also have pain in hands feet, knees & hips. Trouble breathing & sick to stomach & rash on face. How to I get a Dr to listen & help me???

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Hello, @rbsunshine. My goodness, you’ve been through the wringer with all of these symptoms and no diagnosis. Having consistently low red blood counts and low oxygen along with fainting tend to be signs of anemia or possible other blood conditions.

Sepsis is quite dangerous so it’s a relief to hear you’re on the right antibiotics this time. But with your kidney issues, elevated liver enzyme numbers, low blood counts and other symptoms, it’s difficult to understand how you’re not getting any followup care.

Usually when a patient is released from the ER they are instructed to see their primary care physician within a week of discharge. Do you have another appointment scheduled?
What has your primary doctor said about your low red blood count?

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I’m waiting to get a diagnosis for the last 2 years I’ve been having a hemoglobin issue & low red blood count & low oxygen. The beginning of the year I fainted & my teeth went threw my mouth. I’ve been having kidney stones & surgery. The first ER missed it. I had sepsis & my blood pressure just drops. They had me on wrong meds & I got sepsis again in a week but this time was put on correct antibiotics & Kidney stone was found blocking severely infected kidney. This week I ho to ER due to pain in kidney & infection & stones again. Bloodwork came back with low red & white count low oxygen & liver count high. I also have pain in hands feet, knees & hips. Trouble breathing & sick to stomach & rash on face. How to I get a Dr to listen & help me???

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I have been researching everything I can get my hands on.
We wont have a definitive conclusion until the bone marrow culture comes back in another w
week.
God Bless you

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@cathy77

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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cathy07
This was my first post also (oan10429)
I don't know what has caused my ITP.
Remember, NO one has to feel low tech. Read the internet from good sites (Mayo Clinic, John Hopkins, Cleveland Clinic) Lots of information. I don't know your husband's conditions are but there is lots of help out there. Be as patient as you can. My wife is so compassionate. Be as understanding as you can. If I understand your comments right you have ITP too. Again, patience, understanding, compassion......hopefully you get doctors who are compassionate too and listens to your concerns. We are also not alone. WE will get help

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Hello. Once they know the u settling issue that will help. Have they determined that yet? Sorry if you posted it and I over looked it.
My s/o has low platelets, wbc and red blood cells, hemoglobin and hemocrir. He has thrombocytopenia and pantocytopenia sorry about spelling to May long words. Any way he has cirrhosis, hepatitis from alcohol use disorder.
Right now everything is stable but I don’t know much about all these disorders wished I could learn more. I did some research and there are vitamins that would help raise his platelets etc.

Have you done any other research or do you know any more about the cause?

Gif bless you and keep you safe.

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