The following last-sentence excerpts were given by actual different physicians who were asked specific questions by MS patients on a regional US MS Society website regarding MS and their medications. The physicians do not appear to be neurologists but front-line family physicians recruited by the MS Society to answer patient questions about medications. The questions are not indicated below because the answers are more informative. The questions, mostly about medications are similar and can be implied. Each answer by itself is not incriminating but collectively the honest answers by these physicians seem to indicate that successful treatment of MS is more dependent on luck than drug efficacy, and they had no problem saying so.
A: The trial found that glatiramer acetate (GA) Copaxone was ineffective in reducing functional deterioration in the patients. The study’s primary and secondary endpoints were not met. (GA is the active pharmaceutical ingredient in Copaxone, Teva’s ethical treatment for multiple sclerosis).
A: There is no evidence to date that any of the disease modifying drugs influence the course of SPMS, as this tends to be a degenerative rather than an inflammatory process. If however the new lesions are active (determined by gadolinium enhancement) inflammation is inferred and treatment may be reasonable. A second opinion at an MS center may be useful. Good luck!
A: Certainly controversy exists, and the degree of effectiveness has been challenged by at least one collection and review of several studies, but the overwhelming opinion of physicians support early treatment with a DMA including copaxone. Good luck. It’s a complicated situation.
A: The goals of treatment are largely to reduce the number of new relapses or attacks, to cut down on the chance for future disability but most of the available medications do not reliably get rid of the symptoms or disability you are already experiencing. Hang in there and good luck with your next appointment!
A: Novantrone has also been associated with heart problems and even in some rare instances with leukemia but your neurologist must have a reason. If you are uncomfortable with the approach and/or the risks, and second opinion in an MS center might be helpful.
A: If these measures fail, although the scientific rationale is poor, lidoderm patches occasional are quite helpful. I would suggest you review some of these possibilities with you neurologist and if not effective, request an opinion from a pain center as well.
A: But some things are known, and various trials have been ongoing for some years—-a trial with copaxone seemed to have some slight promise, and one with retuximab was recently completed. This is an area where stem cell research is liable to have some relevance. So keep up your hopes.
A: Unfortunately, at this time, there is no “standard” treatment regimen with an attached guarantee. In addition to disease modifying treatment, there are a number of avenues for symptom management, including non-pharmacologic treatments (physical therapy, etc) as well as medications. This includes agents for spasticity, mobility, bladder impairment, and to some degree, cognitive impairment. An approach that stresses a comprehensive program of care is generally the best way to proceed.
A: I would assume that based on your latest symptoms, your disease is active. The new lesions on MRI must be interpreted in that context, and I would encourage you to discuss this further with your neurologist and treatment team. Good luck with this as you move forward!
A: Your neurologist should be able to confirm the diagnosis of trigeminal neuralgia and help you with a choice of treatment. As you are experiencing, this can be a terrible pain, but fortunately there is a very good chance that treatment will help you get rid of it. Good luck!
A: It is important to remember that none of the current agents cure MS. They may reduce the frequency of attacks and may, over the long run, result in less overall disability. These medications are important advances, but there is a long way to go.
A: There is little data on the effect on Copaxone on primary progressive MS; most neurologists think it is probably not effective, but the question is not answered. Good luck!
A: We monitor patients in your situation very closely and jump in with treatment as needed on an individual basis. Good luck!
A: As we wait for new avenues of treatment for PPMS, it is most important to maximize symptomatic treatment of gait, muscle stiffness, and other symptoms with a program of good nutrition, exercise, physical therapy, and medications, if appropriate. This may be a good option for many patients.