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Myelodysplastic Syndrome and Sjogren's
Blood Cancers & Disorders | Last Active: May 24 4:18am | Replies (16)Comment receiving replies
Welcome to Connect @suetex There are several members in the forum who also have MDS. I’ve posted a couple links below for you with some of the current discussions from these members. I wasn’t able to find references to anyone having both MDS and the autoimmune condition of Sjogren's.
>Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
With @momz @rrivory @lorieafoote and other members who have MDS.
>MDS (myelodysplastic syndrome)
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
With members @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2
There are also quite a few members with Sjogren's. The symptoms can vary widely for this condition. I’m sorry you’re dealing with a double whammy.
How long have you had MDS? Are you currently in any treatment program?
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My MDS was discovered in a bone marrow biopsy I had done last March. I was asking my oncologist (had him because of breast cancer which is in remission) why I had low platelettes. He saw that I also had high monocytes, and had those for a number of years. Test showed two mutations and diagnosis was MDS. He monitors my various levels and is presently trying (unsuccessfuly) to raise my RBCs which are low but not a bother yet
Sjogren's can cause cytopenia also so who knows? I am going to IVIg treatment every 3 weeks for the Sjogren's neuropathy but I suspect I need a course of Rituximab as my fiber counts are zero. Yes, I am complicated. My Crohn's seem to "gone away" after about 50 yrs and no one talks about my PMR. It seems far down the list.