Low Platelets: Diagnosis to be confirmed

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!

Hello, I have reoccurring TTP. I have had 4 bouts, the first was in 2009. I was treated with Rituximab (Rituxin) through IV and it is a series of 4 treatments. Prednisone will also affect your blood sugar levels, possibly making them higher so please monitor. I was also treated with plasmapheresis (frozen platelets) to increase my platelets. My body shuts off the Adams T13 enzyme that makes platelets. I am wondering platelets should be between 150,000-400,000. My lowest was 6,000 and below 11,000 there is concern for internal bleeding! So I am confused with you number 17!
I hope you find answers! Blessings always!

I hope this helps!!

Good morning, Well I have been diagnosed by Mayo Drs this week and it turns out I have MDS-Low grade.
Not ITP or Megakaryocytic Hypoplasia as previously diagnosed by my Hematologist/Oncologist.
Therefore, I have been taken off Promacta, Prednisone and Rituxan. Mayo has taken over my case.
I go to Mayo Clinic in Jacksonville, Florida on Nov 1st for a bone marrow biopsy. Mayo reviewed my recent bone marrow biopsy but wants to do their own biopsy, which is fine with me.
My new Dr from Mayo ordered a Platelet transfusion for me last Thursday and I went up to 48K from 14K.
I get checked every Tuesday for platelet count and go from there.
Thats all I have for now, more to follow when I know more.

Hi @rockitman. You have to be relieved to have a sound diagnosis and plan joining forward!!
Personally, I’m relieved to know you’re getting regular platelet checks and infusions! Your reserves were getting pretty low. Ok, still no knife juggling but at least now you can relax a little.
Yes on the 2nd biopsy from Mayo. The bmbx (bone marrow biopsy and examination) are incredibly detailed and the equipment used by Mayo is state of the art. Your doctor can ask for specific tests on the cells collected for his purpose. I’m not surprised that a new bmbx is in the offing. And as a veteran of 13 biopsies, my preference is the quick general anesthesia they offer. You’re out about 15 minutes and wake up happy to juice and snack. 😃
That’s for reporting back. When the next biopsy?

Nov 1st@ 8:30am. Jacksonville, FL.
Thanks for the insight and info, as always, a pleasure to hear from you.
I'll let you know how it all goes.
Stay well.

It turned out I had severe aplastic anemia. My platelet count was at 16. Other cell counts really low too. I was treated with. ATGAM, cyclosporine, and Promacta.
Good Luck and best wishes!

Hi @rockitman. Thought about you this morning with your bone marrow biopsy. I know it takes several days for all the aspects of the biopsy to get analyzed. Hope it all went well. Did you try the pleasant slumber option? 🙂

Hi @elenarey77 Welcome to Mayo Connect! Thank you for sharing your experience with Aplastic Anemia. That’s a very serious disease where the bone marrow isn’t producing blood cells…not just red cells but white blood cells and platelets too, as you experienced. So it’s very positive and encouraging to hear that you’ve had success with the medications!
Will you be on these for life or has it reversed the disease completely?

I was in Mayo yesterday getting my Bone Marrow aspiration. I really don't have any firm diagnosis yet.
I have Myelodysplastic syndrome (MDS) -low grade and Anemia, Hemoglobin has made a big drop in the last few days. Makes me very tired and have minor headaches. I won't have a treatment prescribed until the final biopsy reports are in, two to 10 days. I just went for the quick and easy Biopsy, but it was no problem at all. Also had to get a platelet transfusion while there and also talked with my Dr. for quite a while. If nothing shows up on the final biopsy reports, he seems very optimistic I can get through this with some chemotherapy.
I'll let you know more when I know more.
My best wishes to elenarey77.