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From over clotting to low platelets

Blood Cancers & Disorders | Last Active: Sep 26 11:45am | Replies (3)

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@lschmeit

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.

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Replies to "Seems like they think he has an autoimmune process consuming his platelets. Have they done any..."

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?