Susan Perlman MD
This article is reprinted from “Polio Network News”, Winter 1999, Vol. 15, No. 1, with permission of Gazette International Networking Institute (GINI), 4207 Lindell Blvd., #110, Saint Louis, Missouri 63108-2915, USA. Permission to reproduce the article must be sought from GINI. I have tried to find the source so that it could be linked (more appropriately) from this website, but it seems to be too old? However, there are many excellent publications to be found at the website that GINI has evolved to.
Susan Perlman MD is Associate Clinical Professor of Neurology and Director of the Post-polio Clinic at the University of California Los Angeles (UCLA). Since 1988, the clinic has evaluated and treated 600 polio survivors, with an approach combining neurological assessment, neuro-rehabilitation techniques, medication intervention, and consultation with associates in orthopedics, medicine, sleep disorders, psychology, and alternative (complementary) medicine. The clinic coordinates with the dedicated support groups in southern California and offers educational outreach to the health care community.
Post-polio syndrome is a constellation of new symptoms (fatigue, weakness, pain, cold intolerance, muscle atrophy, or new problems with activities of daily living), occurring in survivors of definitively (by history, exam, or electrical studies) proven acute poliomyelitis, after a period of at least 15 years of stable recovery and performance, and in the absence of any other medical or neurological condition. It is felt to result from the weakening and loss of previously recovered lower motor neuron connections to muscle, possibly due to aging, greater fragility of the recovered nerves, or immune system dysregulation. Onset can be insidious, progression is usually slow, and treatment is most successful with rehabilitation strategies.
Until we better understand the causes of post-polio syndrome, we will have no curative medication. At best, we can use medication to treat the symptoms and to improve the quality of life, and we can avoid using medication that could make the symptoms worse. Certain other diseases (elevated blood cholesterol levels, high blood pressure, heart disease, and cancers) require use of medications with side effects that can exacerbate symptoms of post-polio syndrome. These should be used, but with careful monitoring of the polio survivor’s functioning.
The three primary symptoms that we can treat with medication are weakness of muscle, fatigue (individual muscle and generalized), and pain, that is, post-polio pain, overuse pain, bio-mechanical pain, and bone pain (Gawne, AC, 1995).
Drugs to reverse muscular atrophy or to improve muscle strength by stimulating motor nerve endings to reconnect with muscle fibers (nerve growth factors) are all still experimental. They are currently being tested for use with other motor nerve diseases. Only insulin-like growth factor type 1 (IGF-1), also known as myotrophin or somatomedin-C, has been tested in people with post-polio syndrome (Miller, RG, 1997) (see chart on page 6). It brought no change in strength or fatiguability, but did improve recovery from fatigue after exercise. Human growth hormone has been given to increase a person’s natural level of IGF-1, but showed little or no improvement in strength (Gupta, KI, 1994).
Another approach has been to develop and test drugs that would protect the nerve-muscle connection from new damage in the first place (neuro-protective agents). Again, several have been studied in other diseases, but only selegiline has been tested in post-polio syndrome, bringing some improvement in symptoms but no clear stabilization of the disease (Bamford, CR, 1993). Although many people use over-the-counter anti-oxidant preparations of various types, these have never been formally tested to prove any ability to slow down the changes of post-polio syndrome.
Anabolic steroids, often used by body builders to improve muscle bulk and power, have been tried by polio survivors and other persons with neuromuscular diseases, but The Medical Letter on Drugs and Therapeutics reports the side effects (risk of prostate cancer in men, masculinization in women) greatly outweigh the potential benefits. Metabolic stimulants(L-carnitine*, L-acylcarnitine, coenzyme Q), used to improve the ability of muscle to make energy and possibly reduce fatigue and improve strength, have also been tried by polio survivors, but have been associated with rare allergic reactions and insomnia (Lehmann, T, 1994; Nibbett, JI, 1996).
Specific anti-fatigue drugs can act either in the brain itself (on pathways controlled by dopamine and noradrenaline) or by improving communication at the nerve-muscle connection. These are, respectively, central and peripheral agents. Centrally-acting anti-fatigue medications include amantadine, bromocriptine, selegiline, pemoline, ephedrine, and certain antidepressants (selective seretonin re-uptake inhibitors, which may also have nonadrenaline activity). All have been tested in other fatiguing neurologic illnesses, but only the first three have been studied in post-polio syndrome. Amantadine provided no reduction in fatigue (Stein, DP, 1995), but bromocriptine (Bruno, RL, 1996) and selegiline (Bamford, CR, 1993) did. Several studies have been done using pyridostigmine, a peripherally-acting drug, (Trojan, DA, 1993, 1995; Seizert, BP, 1994; Trojan, DA, 1997) that reflected variable effects on fatigue, possible mild improvement in strength in very weak muscles, and notable side effects (primarily gastrointestinal) .
When contemplating the use of anti-fatigue drugs, we first treat any concomitant problems (other medical or neurological illnesses, sleep disorders, depression) that could be adding to fatigue.
When rehabilitation techniques have not given adequate pain relief and medications must be used, we determine where the pain is coming from before choosing the most specific treatment agents. In our experience, for true post-polio muscle pain, centrally acting, non-narcotic drugs work best (serotonin-stimulating medications, for example tricyclic antidepressants, clonazepam tramadol; central nerve relaxants, for example baclofen, tizanidine; nerve stabilizers, for example anticonvulsant drugs like carbamazepine or gabapentin).
Fortunately, we have no drug for overuse pain. If we did, using it would be like taking the batteries out of a smoke detector because it is noisy at night. This pain makes polio survivors aware that they are overdoing and need to cut back.
Biomechanical pain resistant to non-drug strategies may respond to short-term use of non-steroidal anti-inflammatory drugs (NSAIDs). Some survivors may experience the side effect of gastrointestinal problems.
Joint-related pain may require cautious long-term anti-inflammatory therapy. When a true analgesic is required, whether it is as simple as acetaminophen or as strong as a narcotic, it should be taken in moderate amounts and on a schedule, not just when the pain is so severe that a higher dose is necessary. If taken together, mild anti-histamines or anti-anxiety medication may make pain-killers work better and at a lower dose, but do have their own side effects.
Acupuncture, electro-acupuncture, acupressure massage, and possibly magnetic therapy may work on painful muscle areas along the same pathways as narcotics, and all have been tried in post-polio syndrome. Pain caused by fibromyalgia may respond to low, bedtime doses of amitriptyline (Trojan, DA, 1994).
Cautions about Medications
Many drugs may have drowsiness as a side effect or may increase fatigue within the general population. (Always check the label or ask the pharmacist or physician.) These include central nervous system (brain) depressants, for example narcotics, sedatives, tranquilizers, sleeping pills, and alcohol; antihistamines; antidepressants; and anti-anxiety agents. Polio survivors who take these medications may experience an increase in polio-related weakness and fatigue.
Diuretics (water pills) and laxatives may deplete the body of essential minerals required by nerves and muscles for normal functioning. Many other drugs (antibiotics, chemotherapy agents, even mega doses of some vitamins, for example B6) can contribute to nerve damage. Muscle relaxants and drugs similar to them in chemical structure (quinine, quinidine, procainamide), as well as other medications used for heart or blood pressure problems (beta-blockers, calcium channel blockers), may add to polio-related weakness and fatigue.
Anecdotal evidence suggests that cholesterol-lowering medications of the “statin” family may also increase polio-related weakness and fatigue. Polio survivors, particularly those with a lesser muscle mass, have reported fewer and less dramatic side effects from some medications when taking a lower dose.
Polio survivors and their physicians should scrutinize all medications – current and newly added – used to treat various medical problems to be assured that related conditions, such as fibromyalgia, elevated cholesterol, high blood pressure, etc., are appropriately treated, but with minimal effect on polio-related symptoms. ·
- Stein DP et al. A double-blind, placebo-controlled trial of amantadine for the treatment of fatigue in patients with the post-polio syndrome. Ann NY Acad Sci 1995;753:296-302.
- Dinsmore S et al. A double-blind, placebo-controlled trial of high-dose prednisone for the treatment of post-poliomyelitis syndrome. Ann NY Acad Sci 1995;753:303-313.
- Gupta KL et al. Human growth hormone effect on serum IGF-1 and muscle function in poliomyelitis survivors.Arch Phys Med Rehabil 1994;75:889-894.
- Bruno RL et al. Bromocriptine in the treatment of post-polio fatigue. Am J Phy Med Rehabil 1996;75:340-347.
- Bamford CR et al. Postpolio syndrome response to deprenyl (selegiline). Int J Neurosci 1993;71:183-188.
- Trojan DA et al. Anticholinesterase-responsive neuromuscular junction transmission defects in post-poliomyelitis fatigue. J Neurol Sci 1993;114:170-177.
- Trojan DA, Cashman NR. An open trial of pyridostigmine in post-poliomyelitis syndrome. Can J Neurol Sci 1995;22:223-227.
- Seizert BP et al. Pyridostigmine effect on strength, endurance, and fatigue in post-polio patients (Abstract). Arch Phys Med Rehabil 1994;75:1049.
- Miller RG et al. The effect of recombinant insulin-like growth factor 1 upon exercise-induced fatigue and recovery in patients with post polio syndrome (Abstract). Neurology 1997 (in press).
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