1. < Blood Cancers & Disorders

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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slkanowitz | @slkanowitz | May 19 1:27am

PS you also had a very low blood sugar level and that need’s evaluated as well. It could be you have reactive hypoglycemia or if you are diabetic that your diabetic medication dose is too high. Your PCP could address that.

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2 replies
mwhitaker | @mwhitaker | May 19 6:22am
In reply to @slkanowitz "PS you also had a very low blood sugar level and that need’s evaluated as well...." + (show)
@slkanowitz

PS you also had a very low blood sugar level and that need’s evaluated as well. It could be you have reactive hypoglycemia or if you are diabetic that your diabetic medication dose is too high. Your PCP could address that.

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Thank you for reaching out to me. I am just looking for answers to what is going on with me. I feel like I am just getting the run around. I am in law enforcement I work 40-60 hours a week I am a 911 dispatcher for 23 years.

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mwhitaker | @mwhitaker | May 19 9:36am
In reply to @slkanowitz "PS you also had a very low blood sugar level and that need’s evaluated as well...." + (show)
@slkanowitz

PS you also had a very low blood sugar level and that need’s evaluated as well. It could be you have reactive hypoglycemia or if you are diabetic that your diabetic medication dose is too high. Your PCP could address that.

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I have thought about contacting Mayo Clinic and see if they can help give me some advice about what is going on with me. Do you think that would be a good idea? My husband and I have discussed it and are willing for me to travel to see if they could give me some answers.

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1 reply
slkanowitz | @slkanowitz | May 19 10:06am
In reply to @mwhitaker "I have thought about contacting Mayo Clinic and see if they can help give me some..." + (show)
@mwhitaker

I have thought about contacting Mayo Clinic and see if they can help give me some advice about what is going on with me. Do you think that would be a good idea? My husband and I have discussed it and are willing for me to travel to see if they could give me some answers.

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Absolutely appropriate to go to Mayo Clinic. You may get seen sooner through dermatology than rheumatology but once you’re in the door the initial Dr will get other specialists involved. They will need all your medical records from when this problem started. When you call Mayo for an appointment they guide you through the whole process. They request records directly from your doctor with your signed permission. Good luck! Hope you get an appointment soon. They can usually complete a work up and get to diagnosis within a week.

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mwhitaker | @mwhitaker | May 19 12:23pm
In reply to @mwhitaker "This one wouldn’t load" + (show)
@mwhitaker

This one wouldn’t load

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This is the one I couldn’t get to load last night on the Antithrobin III results

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 20 9:37am
In reply to @mwhitaker "I was in the hospital in September of 2023 with they told me Ischemic Colitis was..." + (show)
@mwhitaker

I was in the hospital in September of 2023 with they told me Ischemic Colitis was there for 3 days and sent home. Two days later my husband took me to another hospital in Jackson,Ms they said I had a blood clot in my upper colon restricting the blood flow that’s why I was having severe stomach pain and bleeding from the rectum. I had two stents done in April of 2023 they found a blood clot in the stent in my lower addomin. Then 2 days later they found two more blood clots in my right arm one in Basilic Vein and one in the Cephalic Vein. Was in the hospital for 8 days that time. Was put on Elaquis 5mg 2x a day. Then in December was taken back to the hospital having an allergic reaction to my Ladinapril and bleeding from the rectum again. Had another blood clot in my left leg. This time they installed a IVC filter. Was there this time for 4 days. Went to a hematologist/ oncologist he done a lot of blood work. I have still been seeing the hematologist/ oncologist he told me on the May 15,2024 I didn’t have a blood disorder but would be on a blood thinner more than likely the rest of my life and I did not have a blood clotting disorder and he had no answer for me as to why I had a total of 5 blood clots. In 3 months. He has scheduled me for a Iron infusion on June 10,2024. I have told him my mother had blood clots really bad she was on Coumadin then on Warfarin. I am looking for a doctor who can tell me what is triggering the blood clots in me. And help get me some answers to why I am having blood clots all of a sudden when I have never had any until September of 2023. The Mayo Clinic has been recommended to me I just hope to get some answers.

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Hi @mwhitaker, if you would like to seek a second opinion at Mayo Clinic, here is the link to request an appointment http://mayocl.in/1mtmR63

As @slkanowitz mentioned, they can walk you through the process of submitting your testing results for review, etc.

Naturally, as fellow patients here on Mayo Clinic Connect, we cannot provide a diagnosis. But we can help you to figure out what questions to ask medical professionals.

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slkanowitz | @slkanowitz | May 22 2:39am

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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becca13 | @becca13 | 1 day ago

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

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rockitman | @rockitman | 1 day ago
In reply to @rockitman "Lori It is so kind of you to get me all this information and tell me..." + (show)
@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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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.

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