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Low Platelets: Diagnosis to be confirmed
Blood Cancers & Disorders | Last Active: May 22 2:39am | Replies (87)Comment receiving replies
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.
Replies to "Lori It is so kind of you to get me all this information and tell me..."
@rocketman
I just read your post regarding ITP. I realize it was from Oct 2022, but was wondering what your results have been since then. My husband has ITP. He was hospitalized when his blood test gave a platelet count of 1 (one.) Hosp released him when they got count up to 152, but it continued to drop again. He also took the 4 infusions of Rituximab. 3 wks ago it was 36, this wk platelets are 46. He'll continue with blood tests, but his next oncologist apptmt is not until Oct 2023, unless count drops more. This is nerve-racking, to say the least.
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Good morning, @rockitman. Just so you know, every time I see your name, I hear Elton John singing Rocketman…my ear-worm for the past 2 days. LOL
At 80 mg, that’s a really hefty dose of prednisone you’re taking so I would suspect this is the culprit for your palpitations and swelling. Powerful miracle drug but it comes with side effects.
You’ll most likely develop what’s called moon face, which is a pretty common side effect from prednisone. It can also cause fat to be redistributed into your back/neck/shoulder area and your thighs. Pretty, huh? It goes away once you are off the prednisone. Feeling flushed, maybe sleepless but if you’re going to paint the house, now’s the time. 😅
Kidding!! With your low platelet level, you need to be cautious and no knife juggling.
Another word of caution with the prednisone…when your doctor decides it’s time to wean you off the prednisone, it will be a very long, slow taper to be safe. Never stop taking it cold turkey.
Do mention all of your symptoms this week in your consultation with the Mayo doctor Wednesday. Helps to make notes ahead of time.
You asked about whether the Rituxan infusions worked before my transplant. This treatment for me was post transplant and basically an educated ‘shot in the dark’ with my transplant doctor and neurologist collaborating to ‘fix’ a reaction I was having. I won’t go into details, but it worked! There was a permanent reversal to the damage on my spinal cord caused by my “new” B-cells in my newly transplanted immune system attacking the myelin sheath on my spinal cord. It never returned and that was the goal. I don’t remember if this showed up on weekly blood work. And again, you and I have/had different blood condition so we can’t really compare blood work. I had acute myeloid leukemia which was very aggressive and provided a lot of excitement! 😂
It will be interesting to hear the opinion of the Mayo team. In the meantime, have your 2nd infusion and take heart that it’s ‘good medicine’. From my understanding Rituxan will start to work very quickly on peripheral blood. That’s the blood in the body outside of the bone marrow. It will take a little longer for the drug to actually make a difference in the marrow and that’s why it’s a 50 day estimate. But it doesn’t mean that the med isn’t working all the while it’s in you and just starts at day 50. It’s already working from day 1.
Talk to you later this week!