Low Platelets: Diagnosis to be confirmed

Hi Rockitman,

I have ITTp and on 2 nd RITUXAN treatment.

My doctor tries not to allow my Adamst13 to go below 40. Recently, AdamsT13 dropped
from 42 IU/ to
ADAMTS13 activity, IU/mL Plasma 0.34 IU/mL . This also decreases my platlet count when the Adamst13 gets activated or
triggers my body to go into high alert. The infusion drip is slow due to the immunotherapy, 3-4 hours per treatment works for me. The Adamst3 will not moved until after the 5th round of treatment.
Rituxan works for me, thus far, prayer, digesting iron rich foods, and trying not to get sick gas been a winning plan.

Hope you get a 2nd opinion, as iTTP is a rare blood disorder . Hope you find a good hematologist that has knowledge on rare blood disorders.

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.

Welcome @rockitman, I'm glad to hear that you have an upcoming second opinion appointment at Mayo Clinic soon and hope they can help confirm a diagnosis and action plan.

@jimmyb63 shared a similar experience with low platelets and taking Rituxan in this related discussion and may have some thoughts to share with you.
– Immune Thrombocytopenia Purpura (ITP): What helps? https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

Do you have any autoimmune conditions? Have your doctors advised any precautions as you live with low platelets? Any questions about going to Mayo Clinic?