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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sisterneedssamiracle | @sisterneedssamiracle | Jul 5 8:35pm

In reply to @rockitman "Hello I was finally diagnosed with APLASTIC Anemia by Moffitt cancer ctr in Tampa, in January..." + (show)

I hope you live a long blessed rest of your life Rocky. Thank you so much for taking the time to respond to me.

rockitman | @rockitman | Jul 5 12:40pm

In reply to @sisterneedssamiracle "I realize your post was in 2022, but I recently lost my sister to acquired TTP...." + (show)

Hello
I was finally diagnosed with APLASTIC Anemia by Moffitt cancer ctr in Tampa, in January 2022.
Moffitt has a team of Dr's dedicated to Aplastic anemia treatment.
I got the ATGAM treatment as an in patient on February 1st thru 5th and was sent home the 6th to see if the treatment was going to work. They said I had a 75% chance of the treatment working.
I began responding within two weeks and by the end of February I started regaining my blood cell Numbers and my Platelets began to increase.
I was put on Cyclosporine, Promacta, prednisone, and a few other drugs to control any infections.
I gradually got to almost normal blood cell Numbers with Platelets at 275K. Up from 7k in January 2022.
I have gradually fallen down in Platelets since you cannot stay on Promacta for a long period or it will do more damage to your bone marrow.
My Platelet count is stable around 110k.
I continue taking Cyclosporine in low dose so as not to damage my kidneys or liver.
Note that prior to going to Moffitt I was in Palative care, living on blood and Platelet transfusions weekly and weekly shots to increase my red and white blood cells.
I became my own advocate for survival and stayed in the fight and searched for the right Dr's and in my case, Moffitt was and is my recommendation for treatment of Aplastic Anemia.
They are very caring and check in with me every month. I have blood tests every month and send them to my Dr's at Moffitt for review.
I'm 77 now and feeling great, hoping my bone marrow holds out a bit longer.
Have a great day.
Rocky

sisterneedssamiracle | @sisterneedssamiracle | Jul 5 10:51am

In reply to @rockitman "Thank you for responding back to me. I started out with a Hematologist that said I..." + (show)

@rockitman

Thank you for responding back to me. I started out with a Hematologist that said I had ITP. He also said I showed no "Markers" for Cancer. He prescribed no medications to me and told me I would be fine and that my platelets would not drop below 20. At that time I was at about 49. Told me to come back in 4 weeks he wanted to run a Liver metabolic blood test. I had 6 years documented liver function tests plus a new Complete Ultra Sound of my Liver , Kidneys, Pancreas, etc. all found to be unremarkable. Also two MRI over 5 years showing unremarkable.
Thats when I changed Dr's. The new Dr sent me for the Bone Marrow Aspiration and Bone Biopsy,
It took three weeks to get the entire Diagnosis findings back. During that time prior to receiving the Bone Marrow Diagnosis the new Dr diagnosed me with ITP, or Pre-Leukemia, and put me on Prednisone 40mg morning, 40mg night. It appeared to be stabilizing the platelet loss for three weeks at 35-36,
Then he diagnosed me with MDS and continued the Prednisone. The next week my platelet level fell to 28.
By this time he had gotten the test results all back from the Bone Marrow Aspiration and Bone Biopsy He then diagnosed me with Aplastic Anemia and put me on Promacta 50mg Sept 15th. Platelets continued to fall weekly
and Promacta doesn't appear to be working for me as I am now at or below 17 as Oct 11th.
On Oct 11th he diagnosed me with Megakaryocytic Hypoplasia. Note that the Bone Marrow Biopsy identified 2 possible diagnosis, 1st) Macrocytic Hyperchromic Anemia and severe thrombocytopenia and may be related to an evolving MDS syndrome. 2nd) Megakaryocytic Hypoplasia and may be related to an evolving Megakaryocytic thrombocytopenia/Aplastic Anemia or evolving MDS syndrome.
That is when I contacted Mayo for Help.
I am currently taking the RITUXAN 4 week treatment. One 6 hr IV every Tuesday morning. I started Oct 11th, next treatment Tuesday the 18th.
I was told not to use heavy machinery, thump my head, don't get cut, shave with electric shaver don't get sick or hurt.
He told me last Tuesday before he sent me for my first RITUXAN treatment that at 10, I may go into a coma and for my wife to get me to the Hospital immediately. That was quite shocking to hear, but I guess he felt she needed to know what could happen.
According to the Dr my immune system is killing my platelets.
He is not much on conversation, so I only get bits and pieces.
But now it appears it's time for real professional help from Mayo and hope I'm not too late.

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I realize your post was in 2022, but I recently lost my sister to acquired TTP. She was diagnosed with this rare disease way too late. She passed waiting for the Adamts13 enzyme. Please update me on your current condition.

bumbum1001 | @bumbum1001 | Jul 4 6:49am

have they ruled out Immune Thrombocytopenic Purpura? My wife's ITP went undiagnosed for years, being told it was something else by many doctors. It lowers white blood cell counts

catherine1290 | @catherine1290 | Jul 1 5:58pm

In reply to @sisterneedssamiracle "It is with a broken heart that I send this message to you. It appears you..." + (show)

I am so sorry to hear this news. It sounds like she was critically ill at the time the new drug was introduced. There is no way to know if not giving it would have slowed her decline. It is a shame this whole platelet issue wasn't caught much sooner. My deepest sympathy to you and your family.

sisterneedssamiracle | @sisterneedssamiracle | Jun 30 8:59pm

It is with a broken heart that I send this message to you. It appears you may have TTP, which my sister was diagnosed with 5 weeks ago, following a seizure and a platelet count of 5 when she was admitted to the hospital. She received, among other cancer treatment drugs, rituxan, and underwent blood transfusions and plasma exchange daily. Sadly, they could never get her platelets above 20. The last drug a dr convinced us would show promise until they received the adamts13 enzyme, was vincristine 2mg. It devastated her body and ended her life within 36 hours. Her funeral is on Friday. She was 56. Our pain is immeasurable. What we have learned is to never simply acquiesce to any Dr's medical opinions when offering treatment options. Do your homework, read up on drug side effects, clinical trial results and be your advocate when it comes to decisions regarding your life. I pray your future holds recovery for you. My beloved sister is gone and I am left broken and distraught with grief.

sisterneedssamiracle | @sisterneedssamiracle | Jun 17 12:26pm

I have subscribed to this forum as my sister was recently diagnosed with TTP following a "seizure" at home. She was initially believed to be suffering from Evan's Syndrome, but was subsequently confirmed to be suffering from TTP. She arrived at the hospital with a platelet count of 5. Yes, 5. I was told she was lucky to even be alive. She is currently hospitalized and expected to be so for an indefinite period of time. For the past two weeks, she has endured a barrage of pills, intravenously administered drugs, blood & plasma transfusions, but they are unsuccessful in achieving a consistent, clinical level of success in getting her platelets above 20. They bottom out from day to day. I am concerned how her organs are being affected by the bombardment of medications she is taking. One of the drugs being administered is an injection called Daratumumab. It is heartbreaking to see what it does to her physically and neurologically. The doctor cannot confirm if this drug or specifically which of the other medications is providing any clinically successful benefit to her. If I understand this condition, the missing Enzyme ADAMTS13 is at the root of this blood disease. My question is, if she is not given this Enzyme, what success can we expect from the "other" forms of treatments. Can high doses of rituximab produce a relevant elevation of platelets? How difficult has it been for TTP patients to get the ADAMTS13 enzyme in their treatment? Is it a political issue (FDA) or a cost issue? Research tells me it is in Canada and the US, why is this not in the immediate first line of treatment to TTP sufferers?

rockitman | @rockitman | Dec 25, 2024

In reply to @rockitman "Lori It is so kind of you to get me all this information and tell me..." + (show)

My first Dr had me on the same regiment of meds you are on including the rutuxin and it did nothing. That was at a local Dr , I went to Mayo and they told me the same thing you have been told and to wait and see what happens. I then called Moffitt cancer ctr.
I went to Moffitt cancer ctr in Tampa Fl. They did the ATGAM treatment and put me on high doses if promacta, cyclosporin, prednisone and a anti biotic. In 7 weeks I had increased blood cells and increased platelets.
By last December I had all normal blood cells and 278 K platelets.
Moffitt has a special team of Dr's. Who handle Aplasic anemia.
I sent them my two bone marrow aspirations and 10 sets of blood tests.
In a week I heard from them and was scheduled for an appointment .
I contacted them in January 2023, on February 1st my ATGAM treatment began . By March 30th my blood tests were showing improvement, my platelets were raising and I no longer needed blood and platelet transfusions.
I am currently doing extremely well and have ZOOM meetings with my doctors once a month.
My dr is Dr. Xie at Moffitt.
My treatment has a 75 -80% of success.
I was 74 when I was finally diagnosed with Aplastic Anemia.
Only Moffitt was able to correctly diagnose my condition, and prescribe the
correct treatment.
Best of luck in getting the proper help.

becca13 | @becca13 | Dec 25, 2024

If you don’t mind me asking what was the result?
I have a platelet level of 28 biopsy tomorrow- just curious if you ever got any results— I know this is an older post but I thought I would ask. Thank you

slkanowitz | @slkanowitz | May 22, 2024

I mistakenly mentioned rheumatology at the Mayo Clinic and I meant hematology for diagnosis of your platelet disorder. I respond to a lot of rheumatology questions and had that on my brain Sorry!

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