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Low Platelets: Diagnosis to be confirmed
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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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.
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
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!
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.
This is the one I couldn’t get to load last night on the Antithrobin III results
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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1 ReactionI 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.
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.
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.
I am not sure why you were told you don’t have a clotting disorder as your posted labs show an elevated anticardiolipin antibody and high DRVVT (lupus anticoagulant), both characteristic of antiphospholipid syndrome (APS). This is a pretty common condition that predisposes to blood clots. It can occur by itself or in conjunction with autoimmune disorders such as lupus. Yes, with your history of multiple blood clots and these lab abnormalities, you will need to be on a blood thinner for the rest of your life. You should also be evaluated by a rheumatologist to rule out lupus or other related autoimmune disorders. I am baffled by your hematology doctor’s comments and would recommend you take these lab results and relay your history of clotting episodes to a different hematologist. You need a proper diagnosis and explanation of this syndrome as well as rheumatology evaluation, particularly if you have any family history of autoimmune disorders or symptoms of a possible AI disease.
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