Dermatology

Long-Term Monitoring and Relapse Care

At a Glance

After Sweet syndrome improves, follow-up remains important because relapses can occur and blood disorders may appear later. Regular CBC testing—often for at least six months and sometimes up to 16 months—helps monitor blood counts while steroids are tapered safely.

Because Sweet syndrome can be a “reactionary” condition, your care does not end when the skin clears. Follow-up is focused on two main goals: ensuring the inflammation does not return (relapse) and monitoring for any underlying health conditions that may take time to appear ^[1]^[2].

Long-Term Blood Monitoring

The most critical part of your follow-up is regular blood work, specifically a complete blood count (CBC) ^[3]. While the skin eruption happens quickly, some underlying triggers—particularly blood cancers like Myelodysplastic Syndrome (MDS) or Acute Myeloid Leukemia (AML)—may not be detectable immediately ^[4]^[5].

The Follow-up Window: Research shows that in some cases, a blood disorder is only diagnosed 4 to 16 months after the first skin flare ^[4]. For this reason, doctors may individualize monitoring, which could include:
- At least 6 months of monitoring for most patients ^[1]^[3].
- Up to 16 months of monitoring if the cause of your Sweet syndrome remains unknown or if you have “histiocytoid” features on your biopsy ^[4]^[3].
What to Watch For: Your doctor is looking for cytopenias—a drop in red blood cells (anemia), platelets (thrombocytopenia), or white blood cells (leukopenia) ^[6]^[2]. If your counts begin to trend downward, it may trigger a referral to a hematologist for more specialized testing ^[7]. Most patients, however, do not have an underlying cancer.

Managing Relapses

Relapses are common in Sweet syndrome, occurring in approximately 25% to 30% of cases, though some studies suggest it may be higher depending on the subtype ^[8]^[3].

Patterns of Return: If Sweet syndrome is linked to an underlying condition like MDS, it often follows a chronic-relapsing pattern, where flares come and go over a long period ^[5]^[1].
The Taper Trap: Many relapses happen while a patient is “tapering” (gradually lowering) their steroid dose. If your symptoms return during this phase, your doctor may need to slow the taper or consider a second-line medication like colchicine or dapsone to help keep the inflammation at bay without the long-term side effects of steroids ^[9]^[10].

Safety During Treatment

Since steroids (like prednisone) are the primary treatment, monitoring for their side effects is a standard part of follow-up care ^[11]. Prolonged or repeated use can affect many systems in your body:

Metabolic Health: Steroids can cause weight gain, high blood pressure, and elevated blood sugar (hyperglycemia) ^[11]^[12].
Bone Density: Even short courses can increase the risk of bone loss. Your doctor may recommend Vitamin D and Calcium supplements or a bone density (DEXA) scan if you require treatment for more than a few months ^[13]^[12].
Infection Risk: While the skin lesions aren’t an infection, the steroids used to treat them can weaken your immune system, making you more susceptible to real germs. Report any new fevers or unusual symptoms to your doctor immediately ^[11]^[14].
Adrenal Health: If you have been on steroids for a long time, your body may stop producing its own natural cortisol. It is vital to never stop your medication suddenly; always follow your doctor’s tapering schedule to avoid adrenal insufficiency ^[15]^[16].

Surveillance Timeline

Phase	Focus	Typical Action
Initial Flare	Diagnosis & Relief	Skin biopsy, baseline CBC, high-dose steroids ^[17]^[10].
Months 1–3	Tapering & Safety	Regular CBCs, monitoring blood pressure/glucose, monitoring for relapse ^[11]^[16].
Months 4–16	Long-term Surveillance	Serial CBCs based on individualized clinical judgment to monitor for delayed blood disorders ^[4]^[1].
Ongoing	Maintenance	If disease is chronic, transition to steroid-sparing agents (e.g., dapsone) ^[10]^[9].

Common questions in this guide

How long should I have blood tests after a Sweet syndrome flare?

Doctors often monitor complete blood counts for at least six months after a flare. Monitoring may continue for up to 16 months when the cause is unknown or the biopsy shows histiocytoid features, based on your individual situation.

How likely is Sweet syndrome to come back?

Relapses occur in about 25% to 30% of cases, although the rate can vary by subtype. Sweet syndrome linked to a blood disorder such as MDS may follow a chronic pattern with repeated flares.

What should I do if my rash returns while I am lowering prednisone?

Contact your treating clinician rather than changing or stopping prednisone on your own. Your clinician may slow the taper or consider a steroid-sparing medicine such as colchicine or dapsone.

Which steroid side effects should be checked during follow-up?

Follow-up may include checks of weight, blood pressure, blood sugar, bone health, and signs of infection. If steroids have been used for a long time, they must be tapered as directed because stopping suddenly can cause adrenal insufficiency.

When do low blood counts require a hematology referral?

A downward trend in red blood cells, platelets, or white blood cells may lead to a hematology referral for more specialized testing. Low counts do not automatically mean cancer, and most people with Sweet syndrome do not have an underlying cancer.

Get notified when new evidence is published on Sweet syndrome.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.

References (17)

1
Sweet Syndrome: Clinical Presentation, Malignancy Association, Autoinflammatory Disorders and Treatment Response in a Cohort of 93 Patients with Long-term Follow-up.
Gil-Lianes J, Luque-Luna M, Alamon-Reig F, et al.
Acta dermato-venereologica 2023; (103()):adv18284 doi:10.2340/actadv.v103.18284.
PMID: 38112209
2
Characteristics of Sweet syndrome in patients with or without malignancy.
Jung EH, Park JH, Hwan Kim K, et al.
Annals of hematology 2022; (101(7)):1499-1508 doi:10.1007/s00277-022-04850-7.
PMID: 35482090
3
Histiocytoid Sweet Syndrome Is More Frequently Associated With Myelodysplastic Syndromes Than the Classical Neutrophilic Variant: A Comparative Series of 62 Patients.
Ghoufi L, Ortonne N, Ingen-Housz-Oro S, et al.
Medicine 2016; (95(15)):e3033 doi:10.1097/MD.0000000000003033.
PMID: 27082547
4
Sweet syndrome: long-term follow-up of 138 patients.
Marcoval J, Martín-Callizo C, Valentí-Medina F, et al.
Clinical and experimental dermatology 2016; (41(7)):741-6 doi:10.1111/ced.12899.
PMID: 27663147
5
Chronic relapsing remitting Sweet syndrome--a harbinger of myelodysplastic syndrome.
Kulasekararaj AG, Kordasti S, Basu T, et al.
British journal of haematology 2015; (170(5)):649-56 doi:10.1111/bjh.13485.
PMID: 25962438
6
Sweet syndrome in patients with and without malignancy: A retrospective analysis of 83 patients from a tertiary academic referral center.
Nelson CA, Noe MH, McMahon CM, et al.
Journal of the American Academy of Dermatology 2018; (78(2)):303-309.e4 doi:10.1016/j.jaad.2017.09.013.
PMID: 29107342
7
Myocarditis Concurrent with Sweet Syndrome: A Presentation of Acute Myeloid Leukemia.
Burkeen CG, Pottinger D, Iragavarapu C, et al.
Case reports in hematology 2021; (2021()):6621007 doi:10.1155/2021/6621007.
PMID: 34055428
8
Hydroxychloroquine-induced Sweet's Syndrome: A Case Report and Literature Review.
Almeida-Silva G, Antunes J, Tribolet de Abreu I, et al.
Acta dermato-venereologica 2025; (105()):adv41333 doi:10.2340/actadv.v105.41333.
PMID: 39780415
9
Sweet's syndrome: a retrospective study of 90 cases from a tertiary care center.
Amouri M, Masmoudi A, Ammar M, et al.
International journal of dermatology 2016; (55(9)):1033-9 doi:10.1111/ijd.13232.
PMID: 26967709
10
Sweet syndrome: an update on clinical aspects, pathophysiology, and treatment.
Calabrese L, Satoh TK, Aoki R, et al.
Italian journal of dermatology and venereology 2024; (159(6)):645-662 doi:10.23736/S2784-8671.24.07956-8.
PMID: 39560338
11
Glucocorticoid prescribing in neurology.
Jones AP, Debono M, Walsh J, et al.
Practical neurology 2024; (24(4)):289-295 doi:10.1136/pn-2023-003855.
PMID: 38553045
12
Long-term Systemic Corticosteroid Exposure: A Systematic Literature Review.
Rice JB, White AG, Scarpati LM, et al.
Clinical therapeutics 2017; (39(11)):2216-2229 doi:10.1016/j.clinthera.2017.09.011.
PMID: 29055500
13
Biological Heterogeneity in Susceptibility to Glucocorticoid-Induced Bone Loss: Short- and Long-Term Hip BMD Trajectories.
Hansen BB, Hass Rubin K, Vind Nielsen C, et al.
The Journal of clinical endocrinology and metabolism 2025; (110(8)):e2570-e2582 doi:10.1210/clinem/dgae832.
PMID: 39671259
14
Burden of chronic corticosteroid use among patients with ulcerative colitis initiated on targeted treatment or conventional therapy in the United States.
Zhdanava M, Zhao R, Manceur AM, et al.
Journal of managed care & specialty pharmacy 2024; (30(2)):141-152 doi:10.18553/jmcp.2024.30.2.141.
PMID: 38308626
15
European Society of Endocrinology and Endocrine Society Joint Clinical Guideline: Diagnosis and therapy of glucocorticoid-induced adrenal insufficiency.
Beuschlein F, Else T, Bancos I, et al.
European journal of endocrinology 2024; (190(5)):G25-G51 doi:10.1093/ejendo/lvae029.
PMID: 38714321
16
Is there a safe and effective way to wean patients off long-term glucocorticoids?
Baker EH
British journal of clinical pharmacology 2020; doi:10.1111/bcp.14679.
PMID: 33289121
17
Sweet's syndrome in a patient with chronic lymphocytic leukaemia.
Smith CR, Williams P
BMJ case reports 2017; (2017()) doi:10.1136/bcr-2017-220317.
PMID: 28784883

This page is for informational purposes only and does not constitute medical advice. Your dermatologist or hematologist should tailor Sweet syndrome blood monitoring, relapse treatment, and steroid tapering to your situation.

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