Low Platelets: Diagnosis to be confirmed

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.

I’m so glad you’re getting a second opinion with Mayo. To be told, “Not gonna happen” is pretty premature. I personally know of 2 people in their mid 70s who have had successful non-related donor stem cell transplants. (Allogenic transplants). It is dependent on the overall health of the individual and that is for you and the doctor to decide together. It’s not an easy journey but worth the risk if it’s the only option for a longer and healthy life.
I was 65 when I had my transplant. Another woman who was having her transplant at the same time, was 73. She and I are still great friends though we live a 1,000 miles apart.
I’m sorry your other doctor isn’t more forthcoming. I obviously can’t predict the outcome of your appointment but I can assure you that you’ll have a more positive interaction with your hematologist at Mayo.

For me, the rituximab quieted my immune system and the 4 treatments were all that were required. I was also on IV Steroid infusions for several months. But the issue never repeated itself thankfully. Rituxan (rituximab) is very affective for quieting the B-cell action. But our situations are different so I don’t know the duration of your treatment. It could all change after your Mayo appointment anyway. So that will be a good discussion to have with your Mayo doctor.

I’ve provided some information about visiting the Jacksonville campus and lodging. There are conversations from other members who live in Jacksonville or attended that campus who can give you some input.
https://connect.mayoclinic.org/discussion/mayo-clinic-florida-campus-advice/
https://www.mayoclinic.org/patient-visitor-guide/florida
Jacksonville lodging: https://connect.mayoclinic.org/discussion/jacksonville-lodging/ --

There are several discussions regarding:
A Few Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/ --

One more piece of information is to get in contact with the Concierge Services at Mayo. They are located in Rochester but they are familiar with all the Mayo Campuses and are really helpful in finding lodging and helping with travel plans and such. It’s a free service and I highly recommend it!

Concierge services
Phone: 507-538-8438
Email: concierge@mayo.edu

Do you have all your medical records and information for the new doctor? Often they will request that new tests be preformed even though you have your own records if more detail is necessary to complete the diagnosis.

I believe you have a Rituxan infusion on Tuesday. That’s good to get another treatment in before you leave.
I’ll be thinking of you Thursday! I’ll actually be in the Rochester Mayo on Thursday for my 3.5 year post bone marrow transplant check up! If one is in your future, I’ll be right there to guide you along as well as a few other members who have walked that walk!
You’re not alone in all of this so let me know how it all goes, ok?

Thank you for giving me some hope with my diagnosis and hope that the Rituxan will work.
Does the Rituxan reverse this immune system problem, (fix it) or do you stay on Rituxan, not sure what happens if Rituxan does work for me. My current Dr. doesn't really go into any detail about my treatments.
As I said previously Promacta and Prednisone did nothing for me.
I will be going to Jacksonville FL. I live 2 hours south of Mayo on the east coast, Titusville FL.
My wife cannot drive any longer and need to know if I end up staying for a while in Jacksonville if affordable lodging is available.
My fear is that at 74 years old I won't be acceptable as a Bone Marrow transplant recipient.
Even though I am in excellent physical condition other than this Bone Marrow issue.
My current Dr said "NOT GONNA HAPPEN" too old.
Looking forward to meeting the DR's at Mayo Wednesday the 19th.
Again thanks for the encouragement.

Be encouraged!

You are not alone

Hi @rockitman You’re not too late…I’m so relieved to hear you have an appointment next week at Mayo. It’s truly a place of hope.

From what I’m reading, with your latest diagnosis your doctor feels your immune system is killing your platelets. That would be the B-cells in your immune system. So that’s where the Rituxan comes into play. It suppresses the B-cells when they launch an attack against our cells with an autoimmune response. They’re supposed to be protecting us but they can also turn against us. I was also on Rituximab for another issue with my bone marrow and it worked in halting the damage.
Rituxan’s initial side effect usually happens with the first dose while you’re having it done at an infusion center. The nurses are right there with benadryl or other meds needed to quickly counteract. When it’s given at a slower drip rate, the reaction to the infusion is diminished. I’ve had that happen and it wasn’t a big deal. My doctor and nurses all explained that this might happen and that they deal with it at the time.

Anyway, you’re scheduled now for a visit to the hematologist at Mayo. I’m a survivor because of my amazing care from the hematologists and bone marrow transplant teams at Mayo Rochester.
Which campus will you be visiting? Do you have any questions on lodging, testing, navigating? How about your Patient Portal, do you have that set up yet?

Thank you for the info, I appreciate your time and hope the best for you.

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?