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TruthinAdver-sing:Evalua-ngTherapeu-cClaims
ThomasLloyd,MD,PhDAssociateProfessorofNeurology,Neuroscience,andGene-cs
Co-director,JohnsHopkinsMyosi-sCenterTMA2017
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Ketamine
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EvidencedBasedMedicine(EBM)
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EBMforIBMConven7onaltreatments• Diet• Medica*ons
– Immunosuppressivemeds– Musclegrowthpromo7ngmeds– Mainstreamsupplements
• Devices– Walkingaids– Ankle-footorthoses
• Therapies– Physicaltherapy/exercise– Occupa7onaltherapy
• Procedures– Esophagealdila7on– Cricopharyngealmyotomy
“Alterna7ve”treatments• Diet• Medica*ons
– “An7inflammatory”supplements– “Bodybuilding”supplements– Othernutriceu7cals
• Devices– Exoskeleton– E-s7m(electricals7mula7on)
• Therapies– Massage– Accupuncture
• Procedures– Stemcellinjec7on– Hyperbaricoxygenchamber
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Medica7onsConven7onaltreatments• Immunosuppressivemeds(SE)
– IVIG– Methotrexate– Sta*ns
• Musclegrowthmeds(SE)– Oxandrolone/testosterone– Bimagrumab– AAV-Follista7n– GrowthHormone
• Mainstreamsupplements– Crea7ne(cheap)– CoenzymeQ10(canbepricey)
“Alterna7ve”treatments• “An7-inflammatory”supplements
• “Bodybuilding”supplements
• Myo-X
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Intravenous immunoglobulin in DM
• 15 patients with biopsy-proven, refractory DM • Continued to receive prednisone • Random assignment: IVIg vs. placebo monthly
for 3 months • Option to cross-over after 3 months
NEJM(1993))
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IVIg leads to improvement • 12 received IVIg
– Major improvement = 9 – Mild improvement = 2 – No change = 1
• 11 received placebo – Major improvement = 0 – Mild improvement = 3 – No change = 3 – Worsening = 5
• Repeat biopsies in those who improved – Increased fiber diameter – Increased capillary number – Resolution of complement
on capillaries – Reduced MHC I expression
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Creatine Supplements + Exercise Beneficial in PM/DM
• Chung et al., Arth & Rheum, 2007 • Creatine 20 grams/day for 8 days, then 3 grams/day • Improved “aggregate functional performance time” with
creatine at 6 months – 50-foot timed walk – Stair ascent and descent tests – “get up and go test”
• Shoulder abduction and hip flexion strength improved with creatine at 3 and 6 months
• Conclusions: Works in DM and PM. I also use it in IBM.
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Alterna7vesupplements
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DevicesConven7onaltreatments “Alterna7ve”treatments
• Walking aids
• Ankle-foot orthoses
• Exoskeleton • E-stim (electrical
stimulation, aka functional neurostimulation)
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Ankle-footorthoses
Stance Control Orthosis
Carbon Fiber
GRAFO “ground reaction”
AFO Carbon Fiber AFO
$45 $26 $260
Ossur “Foot-up”
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Custom fitted carbon fiber ground reaction AFO with removable custom fabricated knee orthosis addition to control genu recurvatum
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“Alterna7ve”Devices
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• Speechtherapy• SLPreferralfordysphagia
• PhysicaltherapyandExercise:TaeChung,MD– Stretching to maintain flexibility/avoid
contractures – Low impact (eg water aerobics) – High frequency, endurance exercises
• Occupa7onaltherapy• Mild: “Hand Helper” device to maintain
strength and flexibility • Moderate: Occupational/Hand therapy
• Exercises • Bracing, interphalyngeal (IP) fusion
Therapy
Ultimate Hand Helper® $20 MedDev Corporation http://shop.hand-helper.com/main.sc
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Benefits of Intensive Resistance Training in Patients With Chronic PM and DM
• Alexanderson et al., Arth & Rheum, 2007 • 5 DM and 3 PM patients on prednisone and other meds. • Exercised 3 days/week
• Improved strength • No increased muscle inflammation (biopsied before and after) • Conclusions: Patients with chronic, stable PM and DM can safely
perform an intensive exercise program with beneficial effects
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Massage,Accupuncture• Li`lescien7ficevidencethatitishelpful
• Essen7allyimpossibletoconductplacebo-controlledtrial
• Minimalrisk• Placeboeffectisrealandcanbebeneficial!
• So,ifitworksforyouthat’sgreat!
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ProceduresConven7onaltreatments “Alterna7ve”treatments
• Esophageal dilation • Cricopharyngeal
myotomy
• Stem cell injection
• Hyperbaric oxygen chamber
• Tendon transfer
(extensor to flexor)
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• Usuallycausedbyconstric7onofupperesophagealsphincter(UES)duetocricopharyngeusinvolvement
• Diagnosis:– VideoFluoroscopySwallowStudywithSLPGuidance
• Management:– Mild:
• Heimlichmaneuvertraining• SLPreferral
– Moderate:• GIreferralforesophagealdila7on
– Severe/Refractory:• ENTreferralforcricopharyngealmyotomy• PEGtubeifweightloss
Dysphagia in IBM
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Balloon Dilation
UES UES
Barium
C
C
Balloon
Before During After
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Tendon transfer
Case: • 74 yo man w/ 15 yr h/o slowly progressive proximal leg > hand
weakness. • Meets definite IBM diagnostic criteria • Exam shows absent distal finger flexion but 4+/5 wrist and 4/5
finger extension. Referral to Orthopedic Hand Surgeon: Tom Brushart. • Thumb IP fusion • ECRB to FDP index and middle finger.
Severely fibrosed FDP muscle adjacent to healthy ERCP muscle
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Pre-op 4 month post-op
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https://sciencebasedmedicine.org/whats-the-harm-stem-cell-tourism-edition/
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IBMUntangled?
Massage Accupuncture
Ketamine Myo-X Exercise
Campath Prednisone Bimagrumab
Hyperbaric chamber
Bimagrumab
Exercise
Exercise
Arimoclomol
Creatine
Creatine CoenzymeQ10
Creatine*
Creatine*
Prednisone
Arimoclomol
Campath
Oxandrolone
Oxandrolone
Prednisone Campath
No valid preclinical models for sporadic IBM
Arimoclomol Oxandrolone Bimagrumab
Exercise
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Sta7nsforpreven7onofhearta`ack/stroke/death
Statin
Statin
Statin
Statin
Statin
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Griggs R C Neurology 2006;66:S30-S32
Natural History of IBM
Quantitative Myometry
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Wheretogetinforma7onondifferenttherapies?
• ReliableWebsites– Myosi7s.org– Cureibm.org(KevinDooleyMD)– MDAwebsite– Fordoctors:
• Uptodate• Pubmed
• Becau7ous– Pa7entslikeme– Facebook– Blogs– Google
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SUMMARY-I
• Evidenced-basedmedicineinmyosi7s– GoodevidencethatimmunosuppressivetherapyworksforDM,PM,andIMNMthoughveryfewcomparisonstudies.
– VeryfewwellperformedclinicaltrialsforsIBM
• WhysofewclinicaltrialsinsIBM?1. Pathogenesispoorlyunderstood!
– Gooddrugtargetsareunknown.– Lackofpreclinicalanimalsmodels
2. Trialsareexpensive.– Pharmawillfundclinicaltrialsforrarediseasesifcanpatent.– Be`ersurrogatebiomarkersneedtobedeveloped.– “Humanized”mousemodelsmayhelp.
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• Foralterna7ve/off-labeltreatments(AOTs)considerrisks/costsvsbenefits– Ifplausiblemechanism,evidenceofefficacyinothermusclediseases,andlowrisk/cost– Irecommend.
• Exercise• Crea-ne• Consider:CoenzymeQ10• Ifdoctorrecommendssta-n,Irecommendrosuvasta-nlowestdose.
– Iflackofclearmechanismorefficacybutnegligiblesideeffects– Iamneutral/suppor-ve.
• Massage• Accupuncture• Placebo!--thepowerofposi-vethinking.
SUMMARY-II
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QUESTIONS?
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• Physical therapy and Exercise – Stretching to maintain flexibility/avoid contractures – Low impact (eg water aerobics) – High frequency endurance exercises
• Orthopedic/Orthotic – Carbon fiber Ground Reaction Ankle foot orthosis
for foot drop and gait? (GRAFO) – Stance Control Orthosis (SCO) – rarely helps – Finger splints, tendon transfer
– Enhance Muscle Strength / Energy – Nutrition (minimize waist, maximize muscle) – Creatine monohydrate (3 grams/day) – Consider Anabolic steroids (oxandrolone)
• Swallowing • Learn Heimlich maneuver • Speech (SLP) therapy and video swallow study • Esophageal dilation if narrowing • Surgery if severe / refractory to dilation
JHU Management of IBM
Carbon Fiber
GRAFO