Macrophagic myofasciitis

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ORPHA:592M60.8
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22Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Macrophagic myofasciitis (MMF) is a rare condition that affects the muscles and the thin tissue (fascia) that surrounds them. It was first described in the late 1990s and is believed to be caused by the persistence of aluminum-containing adjuvants at the site of intramuscular vaccination, most commonly in the deltoid (shoulder) muscle. In people with MMF, the body's immune cells called macrophages accumulate at the injection site and contain tiny aluminum crystals, leading to a specific pattern of inflammation visible under a microscope. The main symptoms of MMF include widespread muscle and joint pain (myalgia and arthralgia), chronic fatigue, and muscle weakness. Many patients also experience cognitive difficulties such as problems with memory and concentration, sometimes described as brain fog. Some people develop a low-grade fever and general feelings of being unwell. The symptoms can be quite debilitating and may persist for months or years. There is currently no cure for macrophagic myofasciitis. Treatment focuses on managing symptoms and improving quality of life. Pain medications, anti-inflammatory drugs, and physical therapy are commonly used. Some patients may benefit from corticosteroids or other immunomodulatory treatments. Research is ongoing to better understand why some individuals develop this condition after vaccination while the vast majority do not, suggesting there may be an underlying predisposition in affected individuals related to how their bodies handle aluminum clearance.

Also known as:

Key symptoms:

Widespread muscle painJoint painChronic and disabling fatigueMuscle weaknessMemory problems and difficulty concentratingHeadachesLow-grade feverGeneral feeling of being unwellSleep disturbancesPain or tenderness at a previous vaccination siteDifficulty exercising or performing physical activitiesMood changes such as anxiety or depression

Clinical phenotype terms (6)— hover any for plain English
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

9 events
Jun 2025Reduced Immunosuppression in Older Renal Transplant Recipients With Trugraf®/TRAC Monitoring (RIOT Trial): A Prospective, Randomized, Multicenter Trial.

Mayo Clinic — PHASE4

TrialRECRUITING
Apr 2025Evaluation of the Benefits of Administering Immunosuppressive Drugs as Single Daily Doses Over the First Year After Liver Transplantation (EASY)

University Hospital, Limoges — PHASE4

TrialRECRUITING
Jan 2025Randomized Controlled Trial of Mycophenolate Mofetil Versus Steroid Therapy in Alcoholic Hepatitis

Institute of Liver and Biliary Sciences, India — NA

TrialNOT YET RECRUITING
Oct 2023Graves' Disease Remission Study: MycoMeth Combo

The First Affiliated Hospital of Xiamen University — PHASE2, PHASE3

TrialRECRUITING
Jul 2019RCT Comparing Immunosuppressive Regimens in Elderly Renal Transplant Recipients

University Medical Center Groningen — PHASE4

TrialACTIVE NOT RECRUITING
Mar 2017The Effect of Mycophenolate Mofetil and Cyclophosphamide on the Lymphocyte Subsets in Patients With Proliferative Lupus Nephritis

The University of Hong Kong — NA

TrialRECRUITING
Jan 2015Study to Improve OS in 18 to 60 Year-old Patients, Comparing Daunorubicin Versus High Dose Idarubicin Induction Regimens, High Dose Versus Intermediate Dose Cytarabine Consolidation Regimens, and Standard Versus MMF Prophylaxis of GvHD in Allografted Patients in First CR

University Hospital, Angers — PHASE2, PHASE3

TrialRECRUITING
Nov 2012The Mycophenolate Pregnancy Registry

Genentech, Inc.

TrialRECRUITING
Jan 2009Prevention of de Novo Allosensitization in Islet Transplant Recipients Following Complete Graft Loss

Rodolfo Alejandro — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Macrophagic myofasciitis.

View clinical trials →

No actively recruiting trials found for Macrophagic myofasciitis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Macrophagic myofasciitis community →

Specialists

22 foundView all specialists →
LP
Leo Pazanin
Specialist
1 Macrophagic myofasciitis publication
IB
Ingeborg Barisic
Specialist
1 Macrophagic myofasciitis publication
IT
Ikuo Tsunoda
Specialist
1 Macrophagic myofasciitis publication
VD
Vlasta Duranovic
Specialist
1 Macrophagic myofasciitis publication
NM
Noriomi Matsumura
Specialist
1 Macrophagic myofasciitis publication
RS
Reona Shiro
Specialist
1 Macrophagic myofasciitis publication
GK
Goran Krnjak
Specialist
1 Macrophagic myofasciitis publication
KV
Katarina Vulin
Specialist
1 Macrophagic myofasciitis publication
MM
Marc A Judson, MD
ALBANY, NY
Specialist
PI on 4 active trials
NM
Nisha Acharya, MD, MS
Specialist
PI on 4 active trials2 Macrophagic myofasciitis publications
NM
Neal Flomenberg, MD
PHILADELPHIA, PA
Specialist
PI on 5 active trials
UC
Use Central Contact
Specialist
PI on 28 active trials
PP
Philippe Armand, MD, PhD
BOSTON, MA
Specialist
PI on 4 active trials
KM
Kirk Kanter, MD
ATLANTA, GA
Specialist
PI on 2 active trials
JP
Jan-Stephan F Sanders, MD PhD
Specialist
PI on 3 active trials
JM
Jean-Daniel Masson
Specialist
1 Macrophagic myofasciitis publication
GB
Ghidaa Badran
Specialist
1 Macrophagic myofasciitis publication
RG
Romain K Gherardi
Specialist
1 Macrophagic myofasciitis publication
FA
François-Jérôme Authier
Specialist
1 Macrophagic myofasciitis publication
GC
Guillemette Crépeaux
Specialist
1 Macrophagic myofasciitis publication
RM
Rodolfo Alejandro, MD
MIAMI, FL
Specialist
PI on 2 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Macrophagic myofasciitis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Macrophagic myofasciitis

Disease timeline:

New recruiting trial: Study to Improve OS in 18 to 60 Year-old Patients, Comparing Daunorubicin Versus High Dose Idarubicin Induction Regimens, High Dose Versus Intermediate Dose Cytarabine Consolidation Regimens, and Standard Versus MMF Prophylaxis of GvHD in Allografted Patients in First CR

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: Prevention of de Novo Allosensitization in Islet Transplant Recipients Following Complete Graft Loss

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: Graves' Disease Remission Study: MycoMeth Combo

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: Evaluation of the Benefits of Administering Immunosuppressive Drugs as Single Daily Doses Over the First Year After Liver Transplantation (EASY)

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: The Effect of Mycophenolate Mofetil and Cyclophosphamide on the Lymphocyte Subsets in Patients With Proliferative Lupus Nephritis

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: The Mycophenolate Pregnancy Registry

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: Optimizing GVHD Prophylaxis After Allogeneic Hematopoietic Cell Transplantation

A new clinical trial is recruiting patients for Macrophagic myofasciitis

New recruiting trial: Reduced Immunosuppression in Older Renal Transplant Recipients With Trugraf®/TRAC Monitoring (RIOT Trial): A Prospective, Randomized, Multicenter Trial.

A new clinical trial is recruiting patients for Macrophagic myofasciitis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Is a deltoid muscle biopsy necessary to confirm my diagnosis, and what does the procedure involve?,What treatment options are available to manage my pain and fatigue?,Should I avoid future vaccinations that contain aluminum adjuvants?,Are there any clinical trials or new research studies I could participate in?,What type of physical therapy or exercise program would be safe and helpful for me?,Could my cognitive symptoms be related to this condition, and how can they be treated?,How often should I have follow-up appointments to monitor my condition?

Common questions about Macrophagic myofasciitis

What is Macrophagic myofasciitis?

Macrophagic myofasciitis (MMF) is a rare condition that affects the muscles and the thin tissue (fascia) that surrounds them. It was first described in the late 1990s and is believed to be caused by the persistence of aluminum-containing adjuvants at the site of intramuscular vaccination, most commonly in the deltoid (shoulder) muscle. In people with MMF, the body's immune cells called macrophages accumulate at the injection site and contain tiny aluminum crystals, leading to a specific pattern of inflammation visible under a microscope. The main symptoms of MMF include widespread muscle and

How is Macrophagic myofasciitis inherited?

Macrophagic myofasciitis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Macrophagic myofasciitis typically begin?

Typical onset of Macrophagic myofasciitis is adult. Age of onset can vary across affected individuals.

Which specialists treat Macrophagic myofasciitis?

22 specialists and care centers treating Macrophagic myofasciitis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.