Cannabis use in myotonic dystrophy patients in Germany and USA: a pilot survey
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Myotonic dystrophies (DMs) represent the most common form of muscular dystrophies in adulthood. Both forms are characterized by a heterogeneous combination of muscular and multi-systemic symptoms, including weakness, myalgia, myotonia, early cataract, cognitive impairment and diabetes . There is no causal therapy for these conditions and even the symptomatic treatment of some of the most disabling muscular symptoms, myalgia and myotonia, with several analgesics and anti-myotonic drugs is often unsatisfactory [2, 3, 4].
Studies on the use of both medical and non-medical cannabis/cannabinoids have shown some efficacy on chronic pain and spasticity . However, the indication “chronic pain” is wide and pathophysiologically not well defined including different forms of pain (e.g. neuropathic pain, cancer-associated pain, headache, fibromyalgia, etc) which respond differently to cannabis use.
The pathophysiology of myalgia in DMs is still unclear and the potential therapeutic...
We like to thank all members of the Myotonic Dystrophies Foundation MDF, San Francisco, USA, and Diagnosegruppe Myotone Dystrophien, Deutsche Gesellschaft für Muskelkranke, Freiburg Germany for all the enthusiasm and ongoing support for our project, and Nexien Biopharma, Inc. for their support of cannabinoid-based, FDA compliant, solutions to help alleviate the symptoms of DM.
There was no funding for this survey.
Compliance with ethical standards
Conflicts of interest
FM, MW, AK, KS, SW have no conflicts of interest. BS is a scientific advisor of Nexien BioPharma, Inc.
This study followed the tenets of the Declaration of Helsinki. As this survey was a patient organization (MW, AK) driven survey, done anonymously and blinded, no formal IRB approval was submitted.
- 2.Heatwole C, Johnson N, Bode R, Dekdebrun J, Dilek N, Hilbert JE, Luebbe E, Martens W, McDermott MP, Quinn C, Rothrock N, Thornton C, Vickrey BG, Victorson D, Moxley RT (2015) Patient-reported impact of symptoms in myotonic dystrophy type 2 (PRISM-2). Neurology 85(24):2136–2146. https://doi.org/10.1212/WNL.0000000000002225 CrossRefGoogle Scholar