Today's post from neuropathy.org (see link below) reinforces the message that there is no current treatment that can actually repair nerve damage. Every available treatment so far, addresses either the underlying cause or the symptoms produced by neuropathy. It also advises a multi-disciplinary approach to treatment which this blog completely supports. It goes on to highlight the current FDA approved treatments for the main divisions of neuropathy but it is by no means exclusive and I would point out that other medications are used as well, depending on where you live. I would still be very wary of using Lyrica (pregabalin) for neuropathic symptoms brought about by diabetes or HIV-related causes. Pfizer themsleves withdrew their own positive recommendations for Lyrica in these cases two years ago and have not re-instated their support for their own drug since, (after considerable problems and court cases concerning side effects). Please talk this over with your doctor or specialist if he or she is prescribing Lyrica for your condition.
By Natacha T. Pires, MBBS, Director, Medical and Public Affairs June 30, 2014
With over 100 forms of neuropathy, there is no one size fits all treatment strategy. While there is no cure, the only treatments available for the over 100 forms of neuropathy are aimed at treating the underlying medical conditions that cause the neuropathy, or treating the symptoms such as neuropathic pain. None treat the actual nerve fiber dysfunction or fiber loss, or help nerve fibers regenerate.
Effective treatment strategies help manage symptoms, improve function, and address emotional health. Patients are encouraged to incorporate a multi-disciplinary approach to improve function and quality of life.
Working with a neurologist specializing in neuromuscular diseases
For people with neuropathy, the neuromuscular neurologist serves as “primary care provider” who makes the neuropathy diagnosis, identifies treatment approaches, follows-up on your care, and as needed coordinates with other care providers. The neurologist will refer you to other specialists in the community as needed, and work with you to ensure a comprehensive and coordinated approach to your care.
Understanding treatment strategies
There are currently FDA-indicated medications for only a handful of neuropathies:
Chronic Inflammatory Demyelinating Neuropathy (or CIDP)
- Gamunex-C (immune globulin injection [human], 10% caprylate / chromatography purified)
Diabetic Nerve Pain
- Cymbalta (duloxetine)
- Lyrica (pregabalin)
- Nucynta (Tapentadol extended release)
Multifocal Motor Neuropathy (or MMN)
- Gammagard (Immune Globulin Infusion [Human] 10%)
Neurogenic Orthostatic Hypotension
- Northera (droxidopa)
Post-Shingles Nerve Pain (Post-Herpetic Neuralgia or PHN)
- Cymbalta (duloxetine)
- Gralise (gabapentin, once daily formulation)
- Lidoderm (lidocaine patch 5%)
- Lyrica (pregabalin)
- Qutenza (topical capsaicin 8%)
It is important to work with your doctor to understand the medication strategy, how the medication works and how much symptom relief to expect, and be aware of the side effects that might arise -- understanding this helps set achievable treatment goals with your physician.
Exploring medications In clinical research studies
Medications in development include those that are in clinical research studies, as well as those that are being reviewed by the FDA:
Charcot-Marie-Tooth Disease (a form of hereditary neuropathy)
- PXT-3003 for Charcot-Marie-Tooth type 1a
Chemotherapy-Induced Peripheral Neuropathy (or CIPN)
- KRN5500 for chronic chemotherapy-induced peripheral neuropathy that is refractory to conventional analgesics
- Tetrodotoxin for chemotherapy-induced peripheral neuropathy
Chronic Inflammatory Demyelinating Neuropathy (or CIDP)
- Fingolimod
- Subcutaneous immunoglobulin (IgPro20)
Diabetic Neuropathy
- CBX129801 (PEGylated synthetic human C-peptide) for type 1 diabetic neuropathy
- Clonidine topical gel for diabetic nerve pain
Lambert-Eaton Myasthenic Syndrome
- Firdapse (amifampridine phosphate or 3,4-diaminopyridine phosphate)
Neuropathic Symptoms Associated with Sarcoidosis
- ARA 290
Small Fiber Neuropathic Pain Associated with Fabry Disease
- Gabapentin
Transthyretin-Mediated Amyloidotic Neuropathy (Familial Amyloid Polyneuropathy or FAP)
- ISIS 420915
- Patisiran (ALN-TTR02)
The decision to participate in a clinical research study is a personal one. It should be discussed with your doctor, family, and friends. Most importantly, it should be an informed decision. Participating in a clinical study allows you to be proactive in the management of your health, have access to new treatments in development before they become available to the general public, and help others by contributing to medical research. If you are considering participating in a clinical study, make it a point to find out as much as you can about the treatment, talk with other participants in the study, and discuss the study with your doctor.
Working with a multidisciplinary team of health care specialists
Effective treatment strategies help manage symptoms, improve function, and address emotional health. If you have weakness, poor balance, and other related neuropathy symptoms, working with rehabilitative care specialists (such as physical and occupational therapists) is important. If your predominant symptoms are pain-related, working with a pain management specialist is important. If you have an inherited neuropathy, working with a genetic counselor is important.
Getting the best neuropathy care involves having the expertise of many different healthcare professionals — each contributing in a unique way to the management of the disease and the symptoms it can cause. In general, it is important to incorporate a multi-disciplinary approach to improve care, function, and quality of life.
Providing emotional support
Much like other chronic diseases, neuropathy has physical, emotional, and psychosocial components that can be overwhelming and can complicate your health care provider’s efforts to help you effectively manage your neuropathy. These comorbidities -- anxiety, depression, mood changes, and sleeping disorders -- may not always appear at diagnosis; they surface over time, and are often unreported and untreated because we -- patients and health care providers alike -- are focused on the physical symptoms of neuropathy such as neuropathic pain, lack of coordination, and imbalance to name a few. However, it is important that these comorbidities be recognized and proactively managed – this helps additionally to improve treatment outcomes in general.
Another aspect of emotional support is the support that comes when family and friends understand neuropathy's toll and are able to appreciate and chip in to help overcome the challenges. Hence, It is also important to help family members, friends, and the public at large to better understand neuropathy – this is as much about getting the support, understanding, and care people with neuropathy need as it is about changing the public’s perception of the neuropathy epidemic.
http://www.neuropathy.org/site/News2?page=NewsArticle&id=8705&security=1&news_iv_ctrl=1101
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