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From over clotting to low platelets
Has anyone had any experience similar.
Patient is a 34 y/o male, no smoking/vaping, no drugs no alcohol. 2014 patient was found to have Antiphospholipid Antibody Syndrome. Patient had surgery @UCSD to remove clots from his lungs in 2016. Has been able to manage the clotting with daily Warfarin.
Fast forward to beginning of July 2024 and patient suffered from a summer cold. Had a regular check up with the following week and labs found patient to have extremely low platelets. Patient was hospitalized for 3 days and had 2 platelet transfusion and was on steroids to kickstart his body into making more platelets. Patient was discharged and suffered side effects from not being tapered off the steroids. Patient also suffered platelet levels dropping shortly after discharge and the steroids levels decreased.
Patients Dr. prescribed more steroids,dosing for 1 month with a slow taper, and found platelet numbers went back up to normal levels.
Patient was reassessed after steroid prescription was completed. It was found that patients platelets were dropping quickly. Friday Sept 13th in the 40,000 range, and by Monday Sept 16th we down into the 30,000 range and still dropping. Patients Dr. has now recommended trying Rituximab to see if it helps correct this issue.
Has anyone else seen something like this? Any other meds/procedures that may be helpful?
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Seems like they think he has an autoimmune process consuming his platelets. Have they done any further testing to check for autoimmune disorders? The original diagnosis with the auto antibody was quite a long time ago. His temporary response to steroids could go with autoimmune disorder. Might be worthwhile consulting with a rheumatologist and/or hematologist to see what could be the cause of the low platelets.
For 7 years I had way too many platelets because my bone marrow was producing way too many of them. I was put on a low-level chemotherapy to keep the platelets under control for many years. Eventually my bone marrow stop producing platelets and I was on a medication called Vonjo temporarily which gave my platelets a boost. Ultimately I ended up with a stem cell transplant. Long journey (day 200 post-transplant) and having Specialists involved is a godsend. Never hurts to get a second opinion!
Lynn S.
Hi Lynn! @lschmeit Somehow the news of your SCT transplant eluded me! Congratulations on reaching Day + 200! Didn’t it seem to take forever to reach that magical Day + 100? By now your energy and stamina should have you feeling a little more spunky.
Five years ago when I had my transplant, there weren’t many members in Connect who had the experience. But our BMT/SCT transplant support group is growing weekly. Those of us who have had transplants have been so vital to the newbies out there so I’d love to have you share your transplant story.
Here are a couple discussions where might like to jump in with both feet!
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Have you experienced any GVHD issues?
@mamafox9, how is your patient doing? Has Rituximab helped?