Has anyone heard of VEXAS syndrome?

Posted by Joe @mayo2290, Mar 17, 2023

Has anyone heard of Vexas ??

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Yes, my friend’s son has it and he recently received a bone marrow transplant as part of his treatment plan.

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@rashida

@mayo2290 are you a veteran? If so, can’t Veterans Affairs help?

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No, unfortunately I am not a veteran.

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asked the question about VEXAS, the medication is very expensive, “Jakafi”, how can I get assistance with the cost of this medication. I am 73 years old on NYS Medicare, with Excellus supplemental insurance. Thanks Joe

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@mayo2290

asked the question about VEXAS, the medication is very expensive, “Jakafi”, how can I get assistance with the cost of this medication. I am 73 years old on NYS Medicare, with Excellus supplemental insurance. Thanks Joe

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Joe @mayo2290, Here's some information I found on financial assistance for the drug.

"How to afford Jakafi?
The IncyteCARES for Jakafi Patient Assistance Program (PAP) helps eligible patients who do not have prescription drug insurance or have trouble affording their out-of-pocket costs for Jakafi. No purchase contingencies or other obligations apply."
--- Financial Assistance and Support Options for Jakafi ® (ruxolitinib):
https://www.incytecares.com/oncology-hematology/jakafi/financial-assistance.aspx

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@bhadfield

Who is the leading Vexas Doctor at Mayo? Wondering how my Rheumatologist stays connected.

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@caithanrah mentioned that her dad is seen by Dr. Mangaonkar at Mayo Clinic https://www.mayoclinic.org/biographies/mangaonkar-abhishek-a-m-b-b-s/bio-20489280

@bhadfield, is your rheumatologist at Mayo Clinic or local and working with doctors at Mayo?

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@mayo2290

asked the question about VEXAS, the medication is very expensive, “Jakafi”, how can I get assistance with the cost of this medication. I am 73 years old on NYS Medicare, with Excellus supplemental insurance. Thanks Joe

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Hi @mayo2290, Joe, I hope you saw the helpful information that @johnbishop provided about the financial assistance program to help with the cost of Jakafi. I suggest talking with a nurse or social worker to help with getting funding through the program.
— Financial Assistance and Support Options for Jakafi ® (ruxolitinib):
https://www.incytecares.com/oncology-hematology/jakafi/financial-assistance.aspx

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Search Vexas fundation and Dr Marcela Ferrada, i hope they can help you!

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My husband was diagnosed with MDS 5 yrs ago. After his last bone marrow biopsy in November it was discovered by genetic testing that he has VEXUS. It is a syndrome that was identified in 2022. He has rashes and superficial vein clots along with his low blood counts due to the MDS. They have always called him an enigma but this diagnosis explains his unusual symptoms. Anyone else know of this newly diagnosed syndrome?

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@anne8185

My husband was diagnosed with MDS 5 yrs ago. After his last bone marrow biopsy in November it was discovered by genetic testing that he has VEXUS. It is a syndrome that was identified in 2022. He has rashes and superficial vein clots along with his low blood counts due to the MDS. They have always called him an enigma but this diagnosis explains his unusual symptoms. Anyone else know of this newly diagnosed syndrome?

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My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October his bone marrow biopsy showed he has VEXAS. A genetic mutation identified in 2020 by NIH. It is an autoimmune disorder that causes multiple symptoms including MDS. He is with Emory Winship in Atlanta. Would like to connect with any others that have this newly named disease.

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@anne8185

My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October his bone marrow biopsy showed he has VEXAS. A genetic mutation identified in 2020 by NIH. It is an autoimmune disorder that causes multiple symptoms including MDS. He is with Emory Winship in Atlanta. Would like to connect with any others that have this newly named disease.

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Hi Anne, I moved your posts about connecting with others living with VEXAS to this existing discussion in the Autoimmune Diseases support group. Click the link to read previous helpful posts and to connect with members like @mayo2290 @rjmatavish @caithanrah and @bhadfield who also have this newer discovered autoimmune disorder.

- Has anyone heard of VEXAS syndrome? https://connect.mayoclinic.org/discussion/has-anyone-heard-of-vexas/

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