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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Hematology

Managing Complications and Organ Involvement

At a Glance

POEMS syndrome can affect hormone levels, fluid balance, kidney function, and blood pressure in the lung arteries. Management often combines treatment of the underlying plasma cell disorder with coordinated monitoring and carefully guided hormone replacement or diuretics.

While nerve damage and abnormal plasma cells are the core of POEMS syndrome, the systemic inflammation driven by high VEGF levels can affect almost every organ in your body. Managing these complications requires a coordinated “team approach,” where specialists in kidney health, hormones, and lung function work alongside your hematologist [1][2].

Hormone Imbalances (Endocrinopathy)

Endocrine issues are highly common; some cohort studies suggest they eventually affect up to 90% of patients [3][4]. Because your hormones control everything from energy to metabolism, these imbalances can significantly impact how you feel [5].

  • Hypogonadism: Lower levels of sex hormones, which can affect libido and energy [3].
  • Hypothyroidism: An underactive thyroid that can cause fatigue, weight gain, and feeling cold [3][4].
  • Glucose Issues: Changes in how your body processes sugar, sometimes leading to diabetes-like symptoms [3][4].
  • Adrenal Insufficiency: The adrenal glands may not produce enough cortisol, which is vital for responding to stress and illness [4][6].

Safety Warning for Adrenal Insufficiency: If you are prescribed steroid replacement therapy (like hydrocortisone), do not stop taking it abruptly. Missing doses can be life-threatening. You should wear a medical-alert identification and have a clear “sick-day plan” from your endocrinologist instructing you on how to increase your dose during illnesses or emergencies [7][8].

Fluid Overload (Extravascular Volume Overload)

Many patients experience fluid leaking out of their blood vessels, causing swelling (edema) in the legs, fluid in the abdomen (ascites), or fluid around the lungs (pleural effusions) [9][10].

Management: Doctors often use diuretics (water pills) to help your body flush out excess fluid [11]. Safety Warning: Do not adjust your diuretic dose or your salt/fluid intake on your own. Improper use of diuretics can cause dangerously low blood pressure, dehydration, electrolyte imbalances, and worsening kidney function. Always consult your care team [12].

Kidney Function (Renal Impairment)

The kidneys are affected in over 20% of patients in some studies, often showing up as protein in the urine or a decrease in your eGFR (a measure of kidney filtering) [13][14].

Management: Kidney damage in POEMS can often improve once treatment for the underlying plasma cell disorder begins. In one cohort, about 66% of patients saw significant renal improvement [13]. However, recovery varies by individual, and your doctors will monitor your kidney labs closely, especially when prescribing new medications.

High Blood Pressure in the Lungs (Pulmonary Hypertension)

Pulmonary hypertension (high blood pressure in the arteries of the lungs) affects a significant portion of POEMS patients [15][16]. It makes the right side of the heart work harder.

  • Symptoms: Shortness of breath, dizziness, or feeling very tired during light activity [15]. Note: New or rapidly worsening breathlessness can also be a sign of a pulmonary embolism, fluid around the heart, or heart strain, and requires urgent evaluation.
  • Monitoring and Diagnosis: An echocardiogram (ultrasound of the heart) is used to estimate pulmonary pressures and screen for the condition [17]. However, a definitive diagnosis usually requires a specialized test called a right-heart catheterization. Pulmonary hypertension medications should not be started generically without a confirmed diagnosis and specialist guidance [18]. Like other complications, pulmonary hypertension often improves as the primary POEMS treatment takes effect [19].

Common questions in this guide

What organ problems can POEMS syndrome cause?
POEMS syndrome can affect hormone production, fluid balance, kidney filtering, and blood pressure in the lung arteries. Common issues include thyroid or adrenal problems, leg or abdominal swelling, protein in the urine, and pulmonary hypertension. A hematologist may coordinate care with endocrinology, nephrology, and heart or lung specialists.
What hormone tests may be checked in POEMS syndrome?
Your care team may check thyroid, adrenal, and sex hormone levels, along with how your body processes glucose. These tests can help identify hormone problems that contribute to fatigue, changes in weight or temperature tolerance, low energy, or other symptoms. The testing schedule depends on your symptoms and treatment plan.
What should I do if I take hydrocortisone for POEMS-related adrenal insufficiency?
Do not stop hydrocortisone or another steroid replacement medicine abruptly, because missed doses can be life-threatening. Ask your endocrinologist for a written sick-day plan explaining how to adjust the dose during illness or emergencies, and consider wearing medical-alert identification. Follow your specialist's instructions rather than changing the dose on your own.
How is fluid overload from POEMS syndrome treated?
Fluid overload may cause swelling in the legs, fluid in the abdomen, or fluid around the lungs, and doctors may prescribe diuretics to remove excess fluid. Do not change the diuretic dose or your salt and fluid intake without medical guidance. Incorrect changes can cause dehydration, low blood pressure, electrolyte problems, or worsening kidney function.
Can kidney problems caused by POEMS syndrome improve?
Kidney problems such as protein in the urine or a reduced eGFR may improve when treatment addresses the underlying plasma cell disorder. Recovery varies from person to person, so your team will continue checking kidney blood tests and urine results. Tell your doctors about all medicines because some treatments may require kidney-based adjustments.
How is pulmonary hypertension confirmed in POEMS syndrome?
An echocardiogram can screen for pulmonary hypertension and estimate the pressure in the lung arteries, but it usually does not confirm the diagnosis by itself. Right-heart catheterization is the specialized test generally used for confirmation. Pulmonary hypertension medicines should be considered only after appropriate testing and specialist guidance.
When does shortness of breath with POEMS syndrome need urgent attention?
New or rapidly worsening breathlessness requires urgent medical evaluation because it may signal a pulmonary embolism, fluid around the heart, or strain on the heart. Breathlessness during light activity or while lying flat should also be reported promptly to your care team. Do not assume every breathing change is caused by routine fluid buildup.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Which specialists (e.g., endocrinologist, nephrologist, cardiologist) should be part of my care team to manage these organ-related symptoms?
  2. 2.Can you check my hormone levels—specifically thyroid, adrenal, and sex hormones—since these issues are common in POEMS?
  3. 3.Is my kidney function (eGFR) low because of POEMS, and do you expect it to improve once we start treating the plasma cells?
  4. 4.What is my current pulmonary artery pressure on my echocardiogram, and do I need a right-heart catheterization to confirm pulmonary hypertension?
  5. 5.What is my 'sick-day' plan if I get an infection while taking steroid hormone replacements?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (19)
  1. 1

    Comprehensive Diagnosis and Management of POEMS Syndrome.

    D'Sa S, Khwaja J, Keddie S, et al.

    HemaSphere 2022; (6(11)):e796 doi:10.1097/HS9.0000000000000796.

    PMID: 36340912
  2. 2

    POEMS Syndrome.

    Jaccard A, Pascal V, Magy L, Roussel M

    Presse medicale (Paris, France : 1983) 2025; (54(1)):104270 doi:10.1016/j.lpm.2025.104270.

    PMID: 39848571
  3. 3

    Prevalence and Course of Endocrinopathy in POEMS Syndrome.

    Caimari F, Keddie S, Lunn MP, et al.

    The Journal of clinical endocrinology and metabolism 2019; (104(6)):2140-2146 doi:10.1210/jc.2018-01516.

    PMID: 30239770
  4. 4

    A retrospective analysis of endocrinopathy manifestations in 136 Chinese patients with POEMS syndrome.

    Shao Y, Zhang C, Wang X, et al.

    Neuro endocrinology letters 2021; (42(5)):292-296.

    PMID: 34506092
  5. 5

    Endocrine Evaluation in POEMS Syndrome: A Cohort Study.

    Yang H, Zhao H, Gao X, et al.

    Frontiers in endocrinology 2020; (11()):536241 doi:10.3389/fendo.2020.536241.

    PMID: 33193075
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    Endocrine Manifestations in POEMS Syndrome: a case report and literature review.

    Li H, Huang Y, Li Y, et al.

    BMC endocrine disorders 2019; (19(1)):33 doi:10.1186/s12902-019-0355-6.

    PMID: 30902082
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    Improvement of thyroid function in POEMS syndrome after combination therapy of lenalidomide and dexamethasone.

    Yang H, Zhao H, Huang X, et al.

    Leukemia & lymphoma 2019; (60(2)):483-487 doi:10.1080/10428194.2018.1485909.

    PMID: 30407096
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    POEMS syndrome: a rare cause of adrenal insufficiency in a young male.

    Prokop J, Estorninho J, Marote S, et al.

    Endocrinology, diabetes & metabolism case reports 2019; (2019()).

    PMID: 31967972
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    Prevalence, clinical profiles, and prognosis of POEMS syndrome in Japanese nationwide survey.

    Suichi T, Misawa S, Beppu M, et al.

    Neurology 2019; (93(10)):e975-e983 doi:10.1212/WNL.0000000000008062.

    PMID: 31371568
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    A Multicenter Analysis of Clinical Features and Long-Term Outcomes of POEMS Syndrome in Korea.

    Kook HW, Jang JE, Min CK, et al.

    Journal of Korean medical science 2024; (39(2)):e5 doi:10.3346/jkms.2024.39.e5.

    PMID: 38225781
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    Polyneuropathy organomegaly endocrinopathy M-protein and skin changes syndrome with ascites as an early-stage manifestation: A case report.

    Zhou XL, Chang YH, Li L, et al.

    World journal of clinical cases 2023; (11(1)):135-142 doi:10.12998/wjcc.v11.i1.135.

    PMID: 36687199
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    Refractory ascites: unveiling POEMS syndrome as the underlying cause: a case report and literature review.

    Liu S, He Y, Qin J, et al.

    Frontiers in medicine 2025; (12()):1704902 doi:10.3389/fmed.2025.1704902.

    PMID: 41404586
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    Renal impairment in patients with polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy and skin changes syndrome: incidence, treatment and outcome.

    Ye W, Wang C, Cai QQ, et al.

    Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association 2016; (31(2)):275-83 doi:10.1093/ndt/gfv261.

    PMID: 26130736
  14. 14

    Growth Differentiation Factor-15 as a Potential Biomarker for Renal Involvement in POEMS Syndrome.

    Huang Y, Chen J, Yao Y, et al.

    International journal of nephrology and renovascular disease 2025; (18()):133-142 doi:10.2147/IJNRD.S507148.

    PMID: 40416392
  15. 15

    Pulmonary manifestations of POEM syndrome: a retrospective analysis of 282 cases.

    Huang Y, Luo Y, Hou H, Gao J

    BMC pulmonary medicine 2023; (23(1)):465 doi:10.1186/s12890-023-02741-9.

    PMID: 37993859
  16. 16

    Plexogenic pulmonary hypertension associated with POEMS syndrome.

    Czeczok T, Lin P, Yi E

    Respiratory medicine case reports 2017; (22()):168-170 doi:10.1016/j.rmcr.2017.08.011.

    PMID: 28856089
  17. 17

    POEMS syndrome causing left ventricular hypertrophy, myocardial dysfunction, and pericardial effusion: a case report.

    Wang S, Wu X, Li H

    European heart journal. Case reports 2022; (6(1)):ytab504 doi:10.1093/ehjcr/ytab504.

    PMID: 35174305
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    Effectiveness of pulmonary vasodilators on pulmonary hypertension associated with POEMS syndrome.

    Ohashi K, Nishimura R, Sugimoto S, et al.

    Respirology case reports 2019; (7(4)):e00411 doi:10.1002/rcr2.411.

    PMID: 30847222
  19. 19

    A prospective phase II study of low dose lenalidomide plus dexamethasone in patients with newly diagnosed polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes (POEMS) syndrome.

    Li J, Huang XF, Cai QQ, et al.

    American journal of hematology 2018; (93(6)):803-809 doi:10.1002/ajh.25100.

    PMID: 29603764

This page is for informational purposes only and does not constitute medical advice. It explains POEMS-related organ complications, but your hematologist and specialist team should guide testing, medicines, fluid management, and emergency planning.

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