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Mioglobinúria recorrente
ORPHA:99845CID-10 · R82.1CID-11 · 5C5YDOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
MuscularInício infantilHerança AD/AR/Unknown

Um erro inato do metabolismo que se caracteriza pela eliminação anormal de mioglobina (uma proteína dos músculos) na urina, por causa da destruição rápida e grave das fibras dos músculos do corpo.

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Introdução

O que você precisa saber de cara

💬
EM LINGUAGEM SIMPLES

A **mioglobinúria recorrente** é uma doença metabólica rara em que os músculos do corpo sofrem uma destruição rápida e grave em episódios repetidos. Essa quebra das fibras musculares libera uma proteína chamada mioglobina no sangue, que acaba saindo na urina e pode sobrecarregar os rins. Geralmente os primeiros sintomas aparecem na infância, com dores musculares intensas, fraqueza no corpo e urina alterada, frequentemente após esforço físico ou infecções. No Brasil, a condição não possui um protocolo oficial (PCDT) no Ministério da Saúde, e o acompanhamento das crises é realizado pela rede assistencial do SUS.

📋
Informacoes curadas por IA — podem conter imprecisoes

Um erro inato do metabolismo que se caracteriza pela eliminação anormal de mioglobina (uma proteína dos músculos) na urina, por causa da destruição rápida e grave das fibras dos músculos do corpo.

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Início
Childhood
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: R82.1
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

Preparando trilha educativa...

Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Partes do corpo afetadas

💪
Músculos
13 sintomas
🫘
Rins
3 sintomas
❤️
Coração
2 sintomas
🫃
Digestivo
1 sintomas
😀
Face
1 sintomas

+ 19 sintomas em outras categorias

Características mais comuns

100%prev.
Mioglobinúria recorrente
90%prev.
Fraqueza muscular
Muito frequente (99-80%)
90%prev.
Febre
Muito frequente (99-80%)
90%prev.
Creatina quinase altamente elevada
Muito frequente (99-80%)
90%prev.
Urina escura
Muito frequente (99-80%)
55%prev.
Aumento da concentração circulante de lactato desidrogenase
Frequente (79-30%)
39sintomas
Muito frequente (5)
Frequente (11)
Ocasional (15)
Muito raro (1)
Sem dados (7)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 39 características clínicas mais associadas, ordenadas por frequência.

Mioglobinúria recorrenteRecurrent myoglobinuria
Muito frequente100%
Fraqueza muscularMuscle weakness
Muito frequente (99-80%)90%
FebreFever
Muito frequente (99-80%)90%
Creatina quinase altamente elevadaHighly elevated creatine kinase
Muito frequente (99-80%)90%
Urina escuraDark urine
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa11
Últimos 10 anos9publicações
Pico20163 papers
Linha do tempo
20202015Hoje · 2026📈 2016Ano de pico
Publicações por ano (últimos 10 anos)

Encontrou um erro ou informação desatualizada? Sugira uma correção →

Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

4 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Autosomal recessive, Not applicable.

MT-CO1Cytochrome c oxidase subunit 1Disease-causing germline mutation(s) inDesconhecido
VIAS BIOLÓGICAS (6)
Cytoprotection by HMOX1Respiratory electron transportTP53 Regulates Metabolic GenesComplex IV assemblyMitochondrial translation termination
MECANISMO DE DOENÇA

Leber hereditary optic neuropathy

A maternally inherited form of Leber hereditary optic neuropathy, a mitochondrial disease resulting in bilateral painless loss of central vision due to selective degeneration of the retinal ganglion cells and their axons. The disorder shows incomplete penetrance and male predominance. Cardiac conduction defects and neurological defects have also been described in some LHON patients. LHON results from primary mitochondrial DNA mutations affecting the respiratory chain complexes.

OUTRAS DOENÇAS (6)
mitochondrial diseaseMELAS syndromemitochondrial complex IV deficiency, nuclear-typemitochondrial non-syndromic sensorineural hearing loss
HGNC:7419UniProt:P00395
LPIN1Phosphatidate phosphatase LPIN1Disease-causing germline mutation(s) inTolerante
VIAS BIOLÓGICAS (4)
Synthesis of PESynthesis of PCMLL4 and MLL3 complexes regulate expression of PPARG target genes in adipogenesis and hepatic steatosisTriglyceride biosynthesis
MECANISMO DE DOENÇA

Myoglobinuria, acute recurrent, autosomal recessive

Recurrent myoglobinuria is characterized by recurrent attacks of rhabdomyolysis (necrosis or disintegration of skeletal muscle) associated with muscle pain and weakness and followed by excretion of myoglobin in the urine. Renal failure may occasionally occur.

EXPRESSÃO TECIDUAL(Ubíquo)
Nervo tibial
102.4 TPM
Testículo
102.2 TPM
Músculo esquelético
83.1 TPM
Ovário
50.8 TPM
Pituitária
49.1 TPM
OUTRAS DOENÇAS (2)
myoglobinuria, acute recurrent, autosomal recessivehereditary recurrent myoglobinuria
HGNC:13345UniProt:Q14693
OBSCNObscurinDisease-causing germline mutation(s) inTolerante
VIAS BIOLÓGICAS (4)
G alpha (12/13) signalling eventsNRAGE signals death through JNKRHOQ GTPase cycleRHOA GTPase cycle
MECANISMO DE DOENÇA

Rhabdomyolysis 1

An autosomal recessive disorder characterized by severe and recurrent rhabdomyolysis, usually with onset in the teenage years. Some of the episodes may be triggered by exercise or heat; others occur spontaneously. Rhabdomyolysis is the rapid breakdown of damaged or injured skeletal myofibres and may require intensive care management. Muscle breakdown results in release of myofibrillar content into the extracellular space and circulation, resulting in hyperCKemia (hyperCK) and myoglobinuria. RHABDO1 patients may have a history of myalgia and muscle cramps that precede the initial rhabdomyolysis episodes.

EXPRESSÃO TECIDUAL(Ubíquo)
Músculo esquelético
212.9 TPM
Coração - Ventrículo esquerdo
35.5 TPM
Coração - Átrio
24.7 TPM
Cerebelo
21.4 TPM
Cérebro - Hemisfério cerebelar
18.1 TPM
OUTRAS DOENÇAS (2)
hereditary recurrent myoglobinuriarhabdomyolysis, susceptibility to, 1
HGNC:15719UniProt:Q5VST9
MT-CO3Cytochrome c oxidase subunit 3Disease-causing germline mutation(s) inDesconhecido
VIAS BIOLÓGICAS (5)
Cytoprotection by HMOX1Respiratory electron transportTP53 Regulates Metabolic GenesComplex IV assemblyMitochondrial translation termination
MECANISMO DE DOENÇA

Leber hereditary optic neuropathy

A maternally inherited form of Leber hereditary optic neuropathy, a mitochondrial disease resulting in bilateral painless loss of central vision due to selective degeneration of the retinal ganglion cells and their axons. The disorder shows incomplete penetrance and male predominance. Cardiac conduction defects and neurological defects have also been described in some LHON patients. LHON results from primary mitochondrial DNA mutations affecting the respiratory chain complexes.

OUTRAS DOENÇAS (5)
mitochondrial diseasemitochondrial complex IV deficiency, nuclear-typeMELAS syndromehereditary recurrent myoglobinuria
HGNC:7422UniProt:P00414

Variantes genéticas (ClinVar)

262 variantes patogênicas registradas no ClinVar.

🧬 MT-CO3: NC_012920.1:m.8478_13589del ()
🧬 MT-CO3: NC_012920.1:m.8944_15057del ()
🧬 MT-CO3: NC_012920.1(MT-TS2):m.8350_13450del ()
🧬 MT-CO3: NC_012920.1(MT-TS2):m.8480_13440del ()
🧬 MT-CO3: NC_012920.1(MT-CO3):m.9273_9274insATC ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Mioglobinúria recorrente

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Selecione um estado ou use sua localização para ver resultados.

Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.

Pesquisa ativa

Ensaios clínicos abertos e novidades científicas recentes

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

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Publicações mais relevantes

Timeline de publicações
0 papers (10 anos)
#1

Carnitine Palmitoyltransferase II (CPT2) Deficiency: An Overlooked and Elusive Cause of Acute Kidney Injury.

Cureus2024 Sep

Carnitine palmitoyltransferase II (CPT2) deficiency is a rare inherited disorder affecting fatty acid metabolism. This enzymatic defect presents with a broad clinical spectrum, from severe neonatal forms that can be fatal, to milder myopathic variants characterized by myalgia and recurrent myoglobinuria in adolescence and adulthood. Herein, we report the case of a male patient who developed exertional rhabdomyolysis and acute kidney injury due to CPT2 deficiency. This case underscores the importance of considering genetic disorders in the differential diagnosis of patients presenting with recurrent exercise intolerance and metabolic crises. Early recognition and diagnosis enable prompt implementation of dietary and lifestyle modifications aimed at mitigating potential complications such as renal impairment. Moreover, timely diagnosis allows for genetic counseling of affected individuals and their families.

#2

McArdle's Disease: A Differential Diagnosis of Metabolic Myopathies.

Cureus2024 Sep

McArdle's disease, also known as glycogen storage disease type V or McArdle syndrome, is a pure muscle myopathy with an autosomal recessive inheritance pattern. It is caused by mutations in the gene that encodes muscle phosphorylase. Symptoms typically begin in late adolescence or early adulthood, presenting as exercise intolerance. This review focuses on the diagnosis of McArdle's disease, initially manifesting as a clinical picture of rhabdomyolysis in an 18-year-old male patient with a history of minor thalassemia who had been followed in pediatric consultation since age three for failure to thrive. After excluding common causes such as alcohol consumption, drug use, traumatic muscle compression, and other conditions, the diagnosis of McArdle's disease was considered. The diagnosis was supported by laboratory tests showing myoglobinuria and elevated creatine kinase levels, as well as the absence of increased serum lactate following ischemic exercise. Genetic testing confirmed the presence of mutations in the PYGM gene, corroborating the diagnosis. Treatment includes administering a diet rich in slow-absorbing carbohydrates, regular low-intensity physical exercise, and, in some cases, supplementation with vitamin B6 and creatine. The prognosis is generally favorable with proper disease management, although vigorous exercise should be avoided to prevent complications such as severe muscle injury and rhabdomyolysis. Although McArdle's disease is a rare condition, it is likely underdiagnosed. Ideally, it should be considered in the differential diagnosis of rhabdomyolysis in all patients with symptoms of exercise intolerance and/or recurrent myoglobinuria.

#3

Adult-onset carnitine palmitoyl transferase II (CPT II) deficiency presenting with rhabdomyolysis and acute kidney injury.

CEN case reports2024 Apr

Metabolic myopathies are among the treatable causes of rhabdomyolysis and myoglobinuria. Carnitine palmitoyl transferase 2 (CPT II) deficiency is one of the most common causes of recurrent myoglobinuria in adults. It is an inherited disorder of fatty acid oxidation pathway, commonly associated with elevated acylcarnitine levels. In this case report, we present a 49-year-old male patient who developed acute kidney injury after rhabdomyolysis and was thus diagnosed with CPT2 deficiency after his first episode of rhabdomyolysis. Inborn errors of metabolism should be kept in mind in patients with rhabdomyolysis. Acylcarnitine profile may be normal in CPT II deficiency, even during an acute attack, and molecular genetic diagnostics should be applied if there is high index of clinical suspicion.

#4

Whole-exome sequencing detects PYGM variants in two adults with McArdle disease.

Cold Spring Harbor molecular case studies2022 Feb

McArdle disease is a debilitating glycogen storage disease with typical onset in childhood. Here, we describe a former competitive athlete with early adult-onset McArdle disease and a septuagenarian with a history of exercise intolerance since adolescence who was evaluated for proximal muscle weakness. Exome sequencing identified biallelic variants in the PYGM gene for both cases. The former athlete has the common, well-known pathogenic variant p.(Arg50Ter) in trans with a novel missense variant, p.(Asp694Glu). The second individual has a previously described homozygous missense variant, p.(Arg771Gln). Here, we describe the clinical course, enzyme-testing results using muscle tissue, and molecular findings for the individuals and add to the knowledge of the genotypic spectrum of this disorder.

#5

Lipin 1 deficiency causes adult-onset myasthenia with motor neuron dysfunction in humans and neuromuscular junction defects in zebrafish.

Theranostics2021

Lipin 1 is an intracellular protein acting as a phosphatidic acid phosphohydrolase enzyme controlling lipid metabolism. Human recessive mutations in LPIN1 cause recurrent, early-onset myoglobinuria, a condition normally associated with muscle pain and weakness. Whether and how lipin 1 deficiency in humans leads to peripheral neuropathy is yet unclear. Herein, two novel compound heterozygous mutations in LPIN1 with neurological disorders, but no myoglobinuria were identified in an adult-onset syndromic myasthenia family. The present study sought to explore the pathogenic mechanism of LPIN1 in muscular and neural development. Methods: The clinical diagnosis of the proband was compared to the known 48 cases of LPIN1 recessive homozygous mutations. Whole-exome sequencing was carried out on the syndromic myasthenia family to identify the causative gene. The pathogenesis of lipin 1 deficiency during somitogenesis and neurogenesis was investigated using the zebrafish model. Whole-mount in situ hybridization, immunohistochemistry, birefringence analysis, touch-evoke escape response and locomotion assays were performed to observe in vivo the changes in muscles and neurons. The conservatism of the molecular pathways regulated by lipin 1 was evaluated in human primary glioblastoma and mouse myoblast cells by siRNA knockdown, drug treatment, qRT-PCR and Western blotting analysis. Results: The patient exhibited adult-onset myasthenia accompanied by muscle fiber atrophy and nerve demyelination without myoglobinuria. Two novel heterozygous mutations, c.2047A>C (p.I683L) and c.2201G>A (p.R734Q) in LPIN1, were identified in the family and predicted to alter the tertiary structure of LPIN1 protein. Lipin 1 deficiency in zebrafish embryos generated by lpin1 morpholino knockdown or human LPIN1 mutant mRNA injections reproduced the myotomes defects, a reduction both in primary motor neurons and secondary motor neurons projections, morphological changes of post-synaptic clusters of acetylcholine receptors, and myelination defects, which led to reduced touch-evoked response and abnormalities of swimming behaviors. Loss of lipin 1 function in zebrafish and mammalian cells also exhibited altered expression levels of muscle and neuron markers, as well as abnormally enhanced Notch signaling, which was partially rescued by the specific Notch pathway inhibitor DAPT. Conclusions: These findings pointed out that the compound heterozygous mutations in human LPIN1 caused adult-onset syndromic myasthenia with peripheral neuropathy. Moreover, zebrafish could be used to model the neuromuscular phenotypes due to the lipin 1 deficiency, where a novel pathological role of over-activated Notch signaling was discovered and further confirmed in mammalian cell lines.

Publicações recentes

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Associações

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Doença com base genética

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Conselhos e sociedades

Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Perguntas frequentes

O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu

Respostas geradas por IA a partir das fontes citadas

Trata-se de um erro inato do metabolismo que fragiliza as fibras musculares diante de certas condições de estresse energético. A afecção está ligada a mutações genéticas em genes como LPIN1, OBSCN, MT-CO1 e MT-CO3.

Referências

Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete

8 publicações do grafo RarasNet (PubMed) · 6 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. ORPHA:99845
    Orphanet
  2. GARD:16916
    GARD (NIH)
  3. Q55998732
    Wikidata

Dados compilados pelo RarasNet a partir de fontes abertas (Orphanet, OMIM, MONDO, PubMed/EuropePMC, ClinicalTrials.gov, DATASUS, PCDT/MS). Este conteúdo é informativo e não substitui avaliação médica.

Citar este verbete

Raras. (s.d.). Mioglobinúria recorrente. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/mioglobinuria-recorrente

Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Compêndio · Raras BR

Mioglobinúria recorrente

ORPHA:99845 · MONDO:0020504
Prevalência
Unknown
Herança
Autosomal dominant, Autosomal recessive, Not applicable
CID-10
R82.1 · Mioglobinúria
CID-11
Início
Childhood
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1849386
Wikidata

📋 Origem dos dados

Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.

Doença rara (ontologia)
fonte: Orphanet
Identificador unificado
fonte: MONDO
Indexação biomédica
fonte: MeSH (NLM)
Dado público estruturado
fonte: Wikidata
Rara