Low Platelets: Diagnosis to be confirmed

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.

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.

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.

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