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?
Hello @anne8185, welcome to Connect. I am not familiar with VEXAS so as you can see @colleenyoung has moved your posts to this current group with other members who have been diagnosed with this condition. At this time there doesn’t appear to be members who have both MDS and VEXAS.
So I would like to introduce you to members in our MDS support group. Here are a couple of links which take you over to that group if you’re interested.
My husband recieves Arnesp injections every 2 weeks until his hgb ia 10 or above. He is also on Elliquis for the superficial blood clots and prednisone for the rashes and intense itching.
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.
Hi Anne,
My name is Brenda. I was diagnosed August 2023 with MDS.
Hope you can find comfort in this group.
I always feel better knowing I am not alone in this journey.
In 2022 my father had throat cancer and I moved in with him and was his sole caregiver for 5months, so I understand both sides. Please remember to take time for yourself!
😊Brenda
Hello, I'm Don. I was diagnosed with VEXAS in May, 2023 by Dr. Andrea Maderal at the Univ. of Miami Research Center in Miami (she's a Dermatologist). She quickly referred me to the National Institute of Health (NIH), in Bethesda. I visited the NIH for 3 days of testing in October (Hematology, Rheumatology, Bone Marrow Biopsy, the whole works). Coincidentally, Rheumatologist from NIH, Dr. Kelly Corbit, moved to UM in August. She, in coordination with Dr. Peter Grayson and Dr. Bhavisha Patel, have prescribed Prednisone, Tocilizumab, Colchicine, and recently added Celebrex (for joint inflamation). Via previous misdiagnoses, I've been on prednisone for 3 years, averaging 25-30mgs daily. Now with the prednisone I kinda self manage, with two goals, 1) knock back inflamation during 'flares', and 2) reduce dosage to 10mg; in that order as these goals conflict. Also, I've recently begun taking the Tocilizumab via infusion, at max dosage. This has been a Godsend, as previous to August flares were keeping me in bed with severe fever symptoms 3 to 10 days a month! Since August, I've only been in bed 4 or 5 days total.
I would love to hear from others their experiences. I've written more than most on this thread, but would love to share my other experiences/symptoms/previous misdiagnoses, etc. if anyone is interested.
Be well!
Hello, I'm Don. I was diagnosed with VEXAS in May, 2023 by Dr. Andrea Maderal at the Univ. of Miami Research Center in Miami (she's a Dermatologist). She quickly referred me to the National Institute of Health (NIH), in Bethesda. I visited the NIH for 3 days of testing in October (Hematology, Rheumatology, Bone Marrow Biopsy, the whole works). Coincidentally, Rheumatologist from NIH, Dr. Kelly Corbit, moved to UM in August. She, in coordination with Dr. Peter Grayson and Dr. Bhavisha Patel, have prescribed Prednisone, Tocilizumab, Colchicine, and recently added Celebrex (for joint inflamation). Via previous misdiagnoses, I've been on prednisone for 3 years, averaging 25-30mgs daily. Now with the prednisone I kinda self manage, with two goals, 1) knock back inflamation during 'flares', and 2) reduce dosage to 10mg; in that order as these goals conflict. Also, I've recently begun taking the Tocilizumab via infusion, at max dosage. This has been a Godsend, as previous to August flares were keeping me in bed with severe fever symptoms 3 to 10 days a month! Since August, I've only been in bed 4 or 5 days total.
I would love to hear from others their experiences. I've written more than most on this thread, but would love to share my other experiences/symptoms/previous misdiagnoses, etc. if anyone is interested.
Be well!
Welcome to Connect @dpmcgeejr. Thank you for sharing your experience with VEXAS Syndrome. This is a fairly new discovery so there is just a trickling of members in the forum who have been diagnosed. Since this collection of symptoms now has a name I’m expecting they will find this thread like you did!
It’s great that your doctor in Miami was able to confirm your diagnosis. You’ve had quite the medical journey with this disease and it’s wonderful that your treatments are helping to keep your inflammation and flares in check.
Would you mind sharing what your symptoms are/were and what tests were done to diagnosis your VEXAS Syndrome?
Hey, Lori, and good morning to you and anyone else listening.
I am 63. Early in 2021 I began displaying skin lesions and was initially diagnosed with Hives. This Dr. affirmed the diagnosis 2 more times over the next 12 months.
In Jan., 2022 I changed Dermatologists, and in my initial meeting with Dr. Jenna Bordelon she indicated immediately that I did not have Hives. She had an idea of what it might be but needed a biopsy, which was taken. By this time I began having fever like symptoms quite frequently. Dr. Bordelon's diagnosis included Dermal Lupus and Sweets Syndrome, and began me on all three recommended courses of medication for Sweets. sequentially.
My symptoms continued to worsen, and a pattern was developing; I began displaying 'Flares'. Each began similarly. About every 5 to 6 weeks I'd begin to display skin lesions (neck, back, chest, sometimes arms and legs). Within a day or 2 I'd get severe chills (shaking so violently that I'd need help from my wife to undress), followed by fever and night sweats. I'd be IN BED for 3 to 8 days each time; totally incapacitated. Often the symptoms included swollen ears, nose and eye lids. Early in 2023 I displayed very painful blood blisters on my hands. Toward the end of 2022 I began having inflammation in my joints; primarily ankles, knees, wrists and hands/fingers. Throughout I was experiencing various levels of fatigue, never feeling 100%; rather varying from 30-40% up to 85%. Also, Dr. Bordelon began to question the diagnosis, but indicated that it was likely beyond her scope of knowledge. She referred me to Dr. Andrea Maderal at the UMiami Research Hospital.
I met with Dr. Maderal in February, 2023. In our first meeting we reviewed all of the above and she indicated that since we hadn't been able to resolve the Sweets with the standard meds, it was likely being caused by an underlying 'smoldering metastisis'. Fortunately, just 2 weeks earlier she had read a study of VEXAS. She indicated that she doubted this was my problem but encouraged testing as the cost was only $100 and she wanted to rule it out. The genetic test was mailed to me, and in May of 2023 she called to confirm the VEXAS diagnosis. She also indicated that she'd started the process of ordering Tocilizumab (Actemra) with my insurance, indicating that it could take some time. As it turns out, she did have to ultimately request a peer to peer with the insurance company (BCBS). She also applied to the NIH Research program on my behalf. It should be noted that the NIH agrees with the Tocilizumab recommendation, as well as Prednisone and colchicine.
By now my pattern of sickness was incessant; I was very sick very often. Other symptoms arrived, included Metatarsalgia, more arthritic inflammation, more blood blisters, and then in November I developed a 2 foot Deep Vain Thrombosis, so add a blood thinner to my meds!
As mentioned above, I began self injecting Tocilizumab in August, 2023, which was changed to Infusions in January, 2024. We added Celebrex in February due to the severe pain of the Metatarsalgia; very difficult to walk.
I've lost about 20 lbs, which includes a estimated 8 lbs of muscle mass. NIH has strongly advised that I work to maintain and add muscle back, particularly in my legs, so I am working out hard to do so.
This is the first thread I've found on the internet that has a patient actually corresponding about VEXAS, so thanks to Joe for kicking this off! I've reached out to Dr. Beck and team at the VEXAS Foundation to encourage that they begin a Forum on their site as it would be a great centralized touch point for all patients (for instance, I'm not a VEXAS patient at Mayo, but patient One at UM). I hope this is all helpful to others. I'm very interested to hear from others about their symptoms, history, doctors, research, and treatment recommendations!
Hey, Lori, and good morning to you and anyone else listening.
I am 63. Early in 2021 I began displaying skin lesions and was initially diagnosed with Hives. This Dr. affirmed the diagnosis 2 more times over the next 12 months.
In Jan., 2022 I changed Dermatologists, and in my initial meeting with Dr. Jenna Bordelon she indicated immediately that I did not have Hives. She had an idea of what it might be but needed a biopsy, which was taken. By this time I began having fever like symptoms quite frequently. Dr. Bordelon's diagnosis included Dermal Lupus and Sweets Syndrome, and began me on all three recommended courses of medication for Sweets. sequentially.
My symptoms continued to worsen, and a pattern was developing; I began displaying 'Flares'. Each began similarly. About every 5 to 6 weeks I'd begin to display skin lesions (neck, back, chest, sometimes arms and legs). Within a day or 2 I'd get severe chills (shaking so violently that I'd need help from my wife to undress), followed by fever and night sweats. I'd be IN BED for 3 to 8 days each time; totally incapacitated. Often the symptoms included swollen ears, nose and eye lids. Early in 2023 I displayed very painful blood blisters on my hands. Toward the end of 2022 I began having inflammation in my joints; primarily ankles, knees, wrists and hands/fingers. Throughout I was experiencing various levels of fatigue, never feeling 100%; rather varying from 30-40% up to 85%. Also, Dr. Bordelon began to question the diagnosis, but indicated that it was likely beyond her scope of knowledge. She referred me to Dr. Andrea Maderal at the UMiami Research Hospital.
I met with Dr. Maderal in February, 2023. In our first meeting we reviewed all of the above and she indicated that since we hadn't been able to resolve the Sweets with the standard meds, it was likely being caused by an underlying 'smoldering metastisis'. Fortunately, just 2 weeks earlier she had read a study of VEXAS. She indicated that she doubted this was my problem but encouraged testing as the cost was only $100 and she wanted to rule it out. The genetic test was mailed to me, and in May of 2023 she called to confirm the VEXAS diagnosis. She also indicated that she'd started the process of ordering Tocilizumab (Actemra) with my insurance, indicating that it could take some time. As it turns out, she did have to ultimately request a peer to peer with the insurance company (BCBS). She also applied to the NIH Research program on my behalf. It should be noted that the NIH agrees with the Tocilizumab recommendation, as well as Prednisone and colchicine.
By now my pattern of sickness was incessant; I was very sick very often. Other symptoms arrived, included Metatarsalgia, more arthritic inflammation, more blood blisters, and then in November I developed a 2 foot Deep Vain Thrombosis, so add a blood thinner to my meds!
As mentioned above, I began self injecting Tocilizumab in August, 2023, which was changed to Infusions in January, 2024. We added Celebrex in February due to the severe pain of the Metatarsalgia; very difficult to walk.
I've lost about 20 lbs, which includes a estimated 8 lbs of muscle mass. NIH has strongly advised that I work to maintain and add muscle back, particularly in my legs, so I am working out hard to do so.
This is the first thread I've found on the internet that has a patient actually corresponding about VEXAS, so thanks to Joe for kicking this off! I've reached out to Dr. Beck and team at the VEXAS Foundation to encourage that they begin a Forum on their site as it would be a great centralized touch point for all patients (for instance, I'm not a VEXAS patient at Mayo, but patient One at UM). I hope this is all helpful to others. I'm very interested to hear from others about their symptoms, history, doctors, research, and treatment recommendations!
Wow, Don! You’re to be commended on your stamina. I know…you didn’t have a choice, but still! And kudos to your doctors for going the distance in trying to find the cause for your debilitating symptoms!
Again, thank you for sharing your experience of diagnosis and treatments! Connect often shows up first in searches so hopefully anyone else going through similar issues will have an opportunity to read what you’ve shared with me and the forum and be able to get diagnosed…or at least realize there is hope for some relief!
I hope that you’ll remain an active member here with updates on VEXAS information and that others will chime in so we can get a good support group started for all of you!
Keep me posted, ok?
Caithhanrah, just wondering...did you mean that your dad had bone marrow transplant? Would love to know more. With Mayo? How old? Apparently all of us will eventually have to consider transfusions, then transplant. I'd love for your dad to share his particulars if he's comfortable. Would be very helpful as I consider all of these options.
Thanks,
I have Vexas and being treated by Mayo doctors. Im currently on Actemra but it's not working so well yet. Last infusion was increased. I had a bad flair up of arthritis in my feet and ankles recently (couldn't walk) so I was given Prednisone short course. Then another. Symptoms improve but then as I taper they come back. Pain is difficult to manage when these flairs occur.
bhadfield,
I've experienced the same issues. I've posted previously about my experiences. Ankles and feet are also part of my symptoms. I've been on prednisone for over 2.5 years, averaging 25-30mg daily. I work with U Miami Research Hospital, not Mayo, and I am currently on Prednisone, max infusions of Actemra, and we've just added celebrex twice daily for my feet and ankles. I'm also working with the NIH Research team, who affirm UM's mandate for me: dual goals (conflicting) prioritized as 1) increase prednisone dosage during flares (roughly one every 6 to 8 weeks) to knock back inflammation and, 2) reduce prednisone to 10mg daily (so far I haven't been able to get here). During a flare I typically have to increase prednisone dosage to 40mg, then taper slowly (1-2mg per week). Hope this helps.
Hello again, Mayo VEXAS folks. As many of you know, Dr. David Beck, Dr. Peter Grayson, et. al. discovered VEXAS at the end of 2020. Soon thereafter he founded the VEXAS Foundation (vexas.org). The Foundation helped me to find the VEXAS Support Group on Facebook (https://www.facebook.com/groups/4994678537219326). I encourage all VEXAS Patients and family members to join this sharing forum. It is already drawing folks from around the world with this affliction. And by sharing we can support one another with our stories and our treatments. We can also begin to gather information that will help influence innovation in treatments going forward. Blessings and prayers daily for all of you!
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Hello @anne8185, welcome to Connect. I am not familiar with VEXAS so as you can see @colleenyoung has moved your posts to this current group with other members who have been diagnosed with this condition. At this time there doesn’t appear to be members who have both MDS and VEXAS.
So I would like to introduce you to members in our MDS support group. Here are a couple of links which take you over to that group if you’re interested.
Myelodysplastic Syndrome (MDS) (with @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader @ikampel2 and many others who have MDS)
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
Living with MDS (with @momz @nbadry @rrivory @honeymae and others with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
Here is a helpful article about MDS for you: https://www.healthline.com/health/cancer/mds-hematology#symptomshttps://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548%23:~:text=Myelodysplastic%2520syndromes%2520%2528MDS%2529%2520are%2520a%2520group%2520of%2520bone,how%2520the%2520bone%2520marrow%2520creates%2520healthy%2520blood%2520cells.
What type of treatment is your husband receiving for his MDS? Or is he in an active surveillance period?
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1 ReactionMy husband recieves Arnesp injections every 2 weeks until his hgb ia 10 or above. He is also on Elliquis for the superficial blood clots and prednisone for the rashes and intense itching.
-
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Hug
2 ReactionsHi Anne,
My name is Brenda. I was diagnosed August 2023 with MDS.
Hope you can find comfort in this group.
I always feel better knowing I am not alone in this journey.
In 2022 my father had throat cancer and I moved in with him and was his sole caregiver for 5months, so I understand both sides. Please remember to take time for yourself!
😊Brenda
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Like -
Helpful -
Hug
2 ReactionsHello, I'm Don. I was diagnosed with VEXAS in May, 2023 by Dr. Andrea Maderal at the Univ. of Miami Research Center in Miami (she's a Dermatologist). She quickly referred me to the National Institute of Health (NIH), in Bethesda. I visited the NIH for 3 days of testing in October (Hematology, Rheumatology, Bone Marrow Biopsy, the whole works). Coincidentally, Rheumatologist from NIH, Dr. Kelly Corbit, moved to UM in August. She, in coordination with Dr. Peter Grayson and Dr. Bhavisha Patel, have prescribed Prednisone, Tocilizumab, Colchicine, and recently added Celebrex (for joint inflamation). Via previous misdiagnoses, I've been on prednisone for 3 years, averaging 25-30mgs daily. Now with the prednisone I kinda self manage, with two goals, 1) knock back inflamation during 'flares', and 2) reduce dosage to 10mg; in that order as these goals conflict. Also, I've recently begun taking the Tocilizumab via infusion, at max dosage. This has been a Godsend, as previous to August flares were keeping me in bed with severe fever symptoms 3 to 10 days a month! Since August, I've only been in bed 4 or 5 days total.
I would love to hear from others their experiences. I've written more than most on this thread, but would love to share my other experiences/symptoms/previous misdiagnoses, etc. if anyone is interested.
Be well!
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Helpful -
Hug
5 ReactionsWelcome to Connect @dpmcgeejr. Thank you for sharing your experience with VEXAS Syndrome. This is a fairly new discovery so there is just a trickling of members in the forum who have been diagnosed. Since this collection of symptoms now has a name I’m expecting they will find this thread like you did!
It’s great that your doctor in Miami was able to confirm your diagnosis. You’ve had quite the medical journey with this disease and it’s wonderful that your treatments are helping to keep your inflammation and flares in check.
Would you mind sharing what your symptoms are/were and what tests were done to diagnosis your VEXAS Syndrome?
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Like -
Helpful -
Hug
2 ReactionsHey, Lori, and good morning to you and anyone else listening.
I am 63. Early in 2021 I began displaying skin lesions and was initially diagnosed with Hives. This Dr. affirmed the diagnosis 2 more times over the next 12 months.
In Jan., 2022 I changed Dermatologists, and in my initial meeting with Dr. Jenna Bordelon she indicated immediately that I did not have Hives. She had an idea of what it might be but needed a biopsy, which was taken. By this time I began having fever like symptoms quite frequently. Dr. Bordelon's diagnosis included Dermal Lupus and Sweets Syndrome, and began me on all three recommended courses of medication for Sweets. sequentially.
My symptoms continued to worsen, and a pattern was developing; I began displaying 'Flares'. Each began similarly. About every 5 to 6 weeks I'd begin to display skin lesions (neck, back, chest, sometimes arms and legs). Within a day or 2 I'd get severe chills (shaking so violently that I'd need help from my wife to undress), followed by fever and night sweats. I'd be IN BED for 3 to 8 days each time; totally incapacitated. Often the symptoms included swollen ears, nose and eye lids. Early in 2023 I displayed very painful blood blisters on my hands. Toward the end of 2022 I began having inflammation in my joints; primarily ankles, knees, wrists and hands/fingers. Throughout I was experiencing various levels of fatigue, never feeling 100%; rather varying from 30-40% up to 85%. Also, Dr. Bordelon began to question the diagnosis, but indicated that it was likely beyond her scope of knowledge. She referred me to Dr. Andrea Maderal at the UMiami Research Hospital.
I met with Dr. Maderal in February, 2023. In our first meeting we reviewed all of the above and she indicated that since we hadn't been able to resolve the Sweets with the standard meds, it was likely being caused by an underlying 'smoldering metastisis'. Fortunately, just 2 weeks earlier she had read a study of VEXAS. She indicated that she doubted this was my problem but encouraged testing as the cost was only $100 and she wanted to rule it out. The genetic test was mailed to me, and in May of 2023 she called to confirm the VEXAS diagnosis. She also indicated that she'd started the process of ordering Tocilizumab (Actemra) with my insurance, indicating that it could take some time. As it turns out, she did have to ultimately request a peer to peer with the insurance company (BCBS). She also applied to the NIH Research program on my behalf. It should be noted that the NIH agrees with the Tocilizumab recommendation, as well as Prednisone and colchicine.
By now my pattern of sickness was incessant; I was very sick very often. Other symptoms arrived, included Metatarsalgia, more arthritic inflammation, more blood blisters, and then in November I developed a 2 foot Deep Vain Thrombosis, so add a blood thinner to my meds!
As mentioned above, I began self injecting Tocilizumab in August, 2023, which was changed to Infusions in January, 2024. We added Celebrex in February due to the severe pain of the Metatarsalgia; very difficult to walk.
I've lost about 20 lbs, which includes a estimated 8 lbs of muscle mass. NIH has strongly advised that I work to maintain and add muscle back, particularly in my legs, so I am working out hard to do so.
This is the first thread I've found on the internet that has a patient actually corresponding about VEXAS, so thanks to Joe for kicking this off! I've reached out to Dr. Beck and team at the VEXAS Foundation to encourage that they begin a Forum on their site as it would be a great centralized touch point for all patients (for instance, I'm not a VEXAS patient at Mayo, but patient One at UM). I hope this is all helpful to others. I'm very interested to hear from others about their symptoms, history, doctors, research, and treatment recommendations!
Blessings,
Don
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5 ReactionsWow, Don! You’re to be commended on your stamina. I know…you didn’t have a choice, but still! And kudos to your doctors for going the distance in trying to find the cause for your debilitating symptoms!
Again, thank you for sharing your experience of diagnosis and treatments! Connect often shows up first in searches so hopefully anyone else going through similar issues will have an opportunity to read what you’ve shared with me and the forum and be able to get diagnosed…or at least realize there is hope for some relief!
I hope that you’ll remain an active member here with updates on VEXAS information and that others will chime in so we can get a good support group started for all of you!
Keep me posted, ok?
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Like -
Helpful -
Hug
3 ReactionsCaithhanrah, just wondering...did you mean that your dad had bone marrow transplant? Would love to know more. With Mayo? How old? Apparently all of us will eventually have to consider transfusions, then transplant. I'd love for your dad to share his particulars if he's comfortable. Would be very helpful as I consider all of these options.
Thanks,
Don
bhadfield,
I've experienced the same issues. I've posted previously about my experiences. Ankles and feet are also part of my symptoms. I've been on prednisone for over 2.5 years, averaging 25-30mg daily. I work with U Miami Research Hospital, not Mayo, and I am currently on Prednisone, max infusions of Actemra, and we've just added celebrex twice daily for my feet and ankles. I'm also working with the NIH Research team, who affirm UM's mandate for me: dual goals (conflicting) prioritized as 1) increase prednisone dosage during flares (roughly one every 6 to 8 weeks) to knock back inflammation and, 2) reduce prednisone to 10mg daily (so far I haven't been able to get here). During a flare I typically have to increase prednisone dosage to 40mg, then taper slowly (1-2mg per week). Hope this helps.
-
Like -
Helpful -
Hug
1 ReactionHello again, Mayo VEXAS folks. As many of you know, Dr. David Beck, Dr. Peter Grayson, et. al. discovered VEXAS at the end of 2020. Soon thereafter he founded the VEXAS Foundation (vexas.org). The Foundation helped me to find the VEXAS Support Group on Facebook (https://www.facebook.com/groups/4994678537219326). I encourage all VEXAS Patients and family members to join this sharing forum. It is already drawing folks from around the world with this affliction. And by sharing we can support one another with our stories and our treatments. We can also begin to gather information that will help influence innovation in treatments going forward. Blessings and prayers daily for all of you!
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Like -
Helpful -
Hug
2 Reactions