Thank you for your reply. My wife is diagnosed with Sweets Syndrome. We are trying to find out if Mayo can confirm this diagnosis. We have seen the web page, but it doesn't mention any doctor to make an appointment with.
Thank you for your reply. My wife is diagnosed with Sweets Syndrome. We are trying to find out if Mayo can confirm this diagnosis. We have seen the web page, but it doesn't mention any doctor to make an appointment with.
@wvl60, This is an excellent question. The doctors at Mayo work closely as a team to meet the needs of each individual patient. That means that even though you will be assigned an appointment with one specialist in the appropriate department, you will have a whole team of experts involved in your care.
The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Appointment specialists are specially trained to match you with the provider or group that's the best fit for your diagnosis and your history.
SS is a syndrome I never heard of and when I researched on the web I was surprised at how the rash symptoms can mimic Grover's Disease, GD. Both of these skin diseases how rashes manifested in similar areas of the body and both have a common connection in many with leukemia and infection with steroid treatment which may trigger it. I have GD, had adult leukemia (now considered regressed and called pre-leukemia) and because of aspiration pneumonia required 1 week hospitalization with intensive care and bed-rest before my major outbreak of GD 4 years ago.
With GD they can biopsy, but it is not reliable if the rash is going into a dormant stage and my biopsy was negative, but in all other aspects fit the profile. My pattern was a 1 year initial breakout, then 6 months dormant and 6 months active then pattern repeats.
This is a" shot in the dark", as I am sure your specialists correctly identified it as SS instead of GD but take the time on the Mayo skin site to follow the Skin Blog- Grover's Blog. Feb 27, 2019 an idea was presented by Kimass1 which she read about on an earthclinic blog. It is the daily consuming of cilantro, a heavy metal detox which is also high in vitamin K. A crackpot idea? Well I figured it wouldn't hurt me and no other treatments help me and most of us with GD. Cilantro works for me and about 50% of others trying it. Now 51/2 months later no active rash, stopping my newest breakout which began February in it's tracts. I am simply wondering because of the similarities between SS and GD if this "crackpot" idea could help your wife, I don't believe it could hurt. We offer ideas on the Grover's site how to make our cilantro smoothie more palatable and how to store to keep it fresh for a week or how to freeze.
@jwhiteside: I'm sorry to hear about your dad; I hope we can provide some insight to his situation here at Mayo Clinic Connect.
I see it's been some time - a good 7 years - since anyone has commented on personal experience with MASS (Malignancy Associated Sweet Syndome). The previous link referenced above is no longer available at Mayo, however, I've located this that provides a photograph of what this condition looks like: https://www.mayoclinic.org/sweets-syndrome/img-20008118
As far as for what this rare malady is caused by, it is generally associated with a severe response to cancer that can occur in some individuals most frequently those sufferening from acute myeloid leukemia (AML) lymphoma or solid tumors resulting in painful ulcerative skin lesions, fever, and elevated white blood cell (WBC). Although the syndrome can respond well to steroids, there is a risk of recurrence requiring treatment of the underlying malignancy.
How is your father being treated - and responding - to this?
While reading comments about Sweet Syndrome and associated elevated white blood cells, I realized I have had high white4 blood cells in every lab taken over 20 years. I've been on tons of drugs, and am pasting results from pubmed on medically induced white blood cells. No doctor ever suggested this, only said inflammation along with whatever else was going on (from numerous surgeries, maladies, implants, etc) Sooo when none of that is going on, still high WBC. So which meds I'm taking now come to mind, and several are listed as drug induced. Arrgh Why haven't any of the medical teams I have had questioned this? Drugs that commonly induce high white blood cell counts (leukocytosis) include corticosteroids (prednisone, dexamethasone), colony-stimulating factors (filgrastim), lithium, and beta-agonists (epinephrine). These medications work by releasing white blood cells from bone marrow or reducing their movement into tissues, often causing neutrophil elevation.Primary Drugs Causing High White Blood Cells (WBCs)Corticosteroids: Prednisone, prednisolone, dexamethasone, hydrocortisone, and inhaled steroids (budesonide, fluticasone) are leading causes. They typically raise neutrophil counts within 48 hours.Colony-Stimulating Factors (CSFs): Agents like Filgrastim (G-CSF) and Pegfilgrastim are designed to increase neutrophil counts.Lithium: Often causes mild to moderate elevation, historically used to manage neutropenia.Beta-agonists & Epinephrine: Epinephrine and other beta-agonists produce neutrophilia by releasing neutrophils from the vascular marginated pool.Other Potential CausesMedications: Certain antipsychotics (e.g., clozapine), anti-inflammatory drugs, anticonvulsants, and specific antibiotics (e.g., sulfonamides).Stimulants: Amphetamines are associated with higher WBC counts.Other: Heparin, granulocyte-macrophage colony-stimulating factor (GM-CSF), and certain chemotherapy drugs during the recovery phase.
While reading comments about Sweet Syndrome and associated elevated white blood cells, I realized I have had high white4 blood cells in every lab taken over 20 years. I've been on tons of drugs, and am pasting results from pubmed on medically induced white blood cells. No doctor ever suggested this, only said inflammation along with whatever else was going on (from numerous surgeries, maladies, implants, etc) Sooo when none of that is going on, still high WBC. So which meds I'm taking now come to mind, and several are listed as drug induced. Arrgh Why haven't any of the medical teams I have had questioned this? Drugs that commonly induce high white blood cell counts (leukocytosis) include corticosteroids (prednisone, dexamethasone), colony-stimulating factors (filgrastim), lithium, and beta-agonists (epinephrine). These medications work by releasing white blood cells from bone marrow or reducing their movement into tissues, often causing neutrophil elevation.Primary Drugs Causing High White Blood Cells (WBCs)Corticosteroids: Prednisone, prednisolone, dexamethasone, hydrocortisone, and inhaled steroids (budesonide, fluticasone) are leading causes. They typically raise neutrophil counts within 48 hours.Colony-Stimulating Factors (CSFs): Agents like Filgrastim (G-CSF) and Pegfilgrastim are designed to increase neutrophil counts.Lithium: Often causes mild to moderate elevation, historically used to manage neutropenia.Beta-agonists & Epinephrine: Epinephrine and other beta-agonists produce neutrophilia by releasing neutrophils from the vascular marginated pool.Other Potential CausesMedications: Certain antipsychotics (e.g., clozapine), anti-inflammatory drugs, anticonvulsants, and specific antibiotics (e.g., sulfonamides).Stimulants: Amphetamines are associated with higher WBC counts.Other: Heparin, granulocyte-macrophage colony-stimulating factor (GM-CSF), and certain chemotherapy drugs during the recovery phase.
@chrisano: I understand it can be alarming to have lab values that are consistently out of range. Elevated white blood cells (WBC) - or as you noted the medical term for this of leukocytosis - can be associated with a variety of factors, most commonly infection/inflammation, stress and/or smoking.
In the context of this discussion on Malignancy Associated Sweet's Syndrome (MASS), it's important to note the differention between elevated WBC and MASS, as the latter is a rare condition associated with skin lesions - generally blister-like in nature - along with fever, with a specific elevation of neutrophils, a component of WBCs.
A hematologist may be helpful in determining the underlying reason for consistent elevation in these counts in your particular case. Perhaps if you've not already done so, you can ask one of your providers for a referral?
@jwhiteside: I'm sorry to hear about your dad; I hope we can provide some insight to his situation here at Mayo Clinic Connect.
I see it's been some time - a good 7 years - since anyone has commented on personal experience with MASS (Malignancy Associated Sweet Syndome). The previous link referenced above is no longer available at Mayo, however, I've located this that provides a photograph of what this condition looks like: https://www.mayoclinic.org/sweets-syndrome/img-20008118
As far as for what this rare malady is caused by, it is generally associated with a severe response to cancer that can occur in some individuals most frequently those sufferening from acute myeloid leukemia (AML) lymphoma or solid tumors resulting in painful ulcerative skin lesions, fever, and elevated white blood cell (WBC). Although the syndrome can respond well to steroids, there is a risk of recurrence requiring treatment of the underlying malignancy.
How is your father being treated - and responding - to this?
@grammato3 He is at Fox Chase Cancer center in Philadelphia. They have him on two Chemotherapy treatments, one IV and one oral, plus oral corticosteroids. He seems to be responding favorable to the treatment. The lessons are scabbing and the mouth sores seem to be abating slightly. He has lesions on his ears, nose, neck, back - just about everywhere.
@chrisano: I understand it can be alarming to have lab values that are consistently out of range. Elevated white blood cells (WBC) - or as you noted the medical term for this of leukocytosis - can be associated with a variety of factors, most commonly infection/inflammation, stress and/or smoking.
In the context of this discussion on Malignancy Associated Sweet's Syndrome (MASS), it's important to note the differention between elevated WBC and MASS, as the latter is a rare condition associated with skin lesions - generally blister-like in nature - along with fever, with a specific elevation of neutrophils, a component of WBCs.
A hematologist may be helpful in determining the underlying reason for consistent elevation in these counts in your particular case. Perhaps if you've not already done so, you can ask one of your providers for a referral?
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@wvl60, I want to welcome you to Connect. I do not have experience with Sweet' Syndrome, but I did find that it is a rare skin coindition. I understand how lonely it can be when dealing with a rare disease.
https://www.mayoclinic.org/diseases-conditions/sweets-syndrome/symptoms-causes/syc-20351117
Are you currently diagnosed with Sweets Syndrome?
Thank you for your reply. My wife is diagnosed with Sweets Syndrome. We are trying to find out if Mayo can confirm this diagnosis. We have seen the web page, but it doesn't mention any doctor to make an appointment with.
@wvl60, This is an excellent question. The doctors at Mayo work closely as a team to meet the needs of each individual patient. That means that even though you will be assigned an appointment with one specialist in the appropriate department, you will have a whole team of experts involved in your care.
The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Appointment specialists are specially trained to match you with the provider or group that's the best fit for your diagnosis and your history.
I want to share the Visiting Mayo Clinic Discussion Group. You are invited to read and join in anywhere with any questions you think of about going to Mayo. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
SS is a syndrome I never heard of and when I researched on the web I was surprised at how the rash symptoms can mimic Grover's Disease, GD. Both of these skin diseases how rashes manifested in similar areas of the body and both have a common connection in many with leukemia and infection with steroid treatment which may trigger it. I have GD, had adult leukemia (now considered regressed and called pre-leukemia) and because of aspiration pneumonia required 1 week hospitalization with intensive care and bed-rest before my major outbreak of GD 4 years ago.
With GD they can biopsy, but it is not reliable if the rash is going into a dormant stage and my biopsy was negative, but in all other aspects fit the profile. My pattern was a 1 year initial breakout, then 6 months dormant and 6 months active then pattern repeats.
This is a" shot in the dark", as I am sure your specialists correctly identified it as SS instead of GD but take the time on the Mayo skin site to follow the Skin Blog- Grover's Blog. Feb 27, 2019 an idea was presented by Kimass1 which she read about on an earthclinic blog. It is the daily consuming of cilantro, a heavy metal detox which is also high in vitamin K. A crackpot idea? Well I figured it wouldn't hurt me and no other treatments help me and most of us with GD. Cilantro works for me and about 50% of others trying it. Now 51/2 months later no active rash, stopping my newest breakout which began February in it's tracts. I am simply wondering because of the similarities between SS and GD if this "crackpot" idea could help your wife, I don't believe it could hurt. We offer ideas on the Grover's site how to make our cilantro smoothie more palatable and how to store to keep it fresh for a week or how to freeze.
My dad was just diagnosed with the very rare Malignancy Associated Sweet Syndrome, along with his AML diagnosis. Anyone with a similar experience?
@jwhiteside: I'm sorry to hear about your dad; I hope we can provide some insight to his situation here at Mayo Clinic Connect.
I see it's been some time - a good 7 years - since anyone has commented on personal experience with MASS (Malignancy Associated Sweet Syndome). The previous link referenced above is no longer available at Mayo, however, I've located this that provides a photograph of what this condition looks like: https://www.mayoclinic.org/sweets-syndrome/img-20008118
As far as for what this rare malady is caused by, it is generally associated with a severe response to cancer that can occur in some individuals most frequently those sufferening from acute myeloid leukemia (AML) lymphoma or solid tumors resulting in painful ulcerative skin lesions, fever, and elevated white blood cell (WBC). Although the syndrome can respond well to steroids, there is a risk of recurrence requiring treatment of the underlying malignancy.
How is your father being treated - and responding - to this?
While reading comments about Sweet Syndrome and associated elevated white blood cells, I realized I have had high white4 blood cells in every lab taken over 20 years. I've been on tons of drugs, and am pasting results from pubmed on medically induced white blood cells. No doctor ever suggested this, only said inflammation along with whatever else was going on (from numerous surgeries, maladies, implants, etc) Sooo when none of that is going on, still high WBC. So which meds I'm taking now come to mind, and several are listed as drug induced. Arrgh Why haven't any of the medical teams I have had questioned this? Drugs that commonly induce high white blood cell counts (leukocytosis) include corticosteroids (prednisone, dexamethasone), colony-stimulating factors (filgrastim), lithium, and beta-agonists (epinephrine). These medications work by releasing white blood cells from bone marrow or reducing their movement into tissues, often causing neutrophil elevation.Primary Drugs Causing High White Blood Cells (WBCs)Corticosteroids: Prednisone, prednisolone, dexamethasone, hydrocortisone, and inhaled steroids (budesonide, fluticasone) are leading causes. They typically raise neutrophil counts within 48 hours.Colony-Stimulating Factors (CSFs): Agents like Filgrastim (G-CSF) and Pegfilgrastim are designed to increase neutrophil counts.Lithium: Often causes mild to moderate elevation, historically used to manage neutropenia.Beta-agonists & Epinephrine: Epinephrine and other beta-agonists produce neutrophilia by releasing neutrophils from the vascular marginated pool.Other Potential CausesMedications: Certain antipsychotics (e.g., clozapine), anti-inflammatory drugs, anticonvulsants, and specific antibiotics (e.g., sulfonamides).Stimulants: Amphetamines are associated with higher WBC counts.Other: Heparin, granulocyte-macrophage colony-stimulating factor (GM-CSF), and certain chemotherapy drugs during the recovery phase.
@chrisano: I understand it can be alarming to have lab values that are consistently out of range. Elevated white blood cells (WBC) - or as you noted the medical term for this of leukocytosis - can be associated with a variety of factors, most commonly infection/inflammation, stress and/or smoking.
In the context of this discussion on Malignancy Associated Sweet's Syndrome (MASS), it's important to note the differention between elevated WBC and MASS, as the latter is a rare condition associated with skin lesions - generally blister-like in nature - along with fever, with a specific elevation of neutrophils, a component of WBCs.
A hematologist may be helpful in determining the underlying reason for consistent elevation in these counts in your particular case. Perhaps if you've not already done so, you can ask one of your providers for a referral?
@grammato3 He is at Fox Chase Cancer center in Philadelphia. They have him on two Chemotherapy treatments, one IV and one oral, plus oral corticosteroids. He seems to be responding favorable to the treatment. The lessons are scabbing and the mouth sores seem to be abating slightly. He has lesions on his ears, nose, neck, back - just about everywhere.
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1 Reaction@grammato3 Thanks, Susan! Very helpful info! Now I need to follow up.
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