The MS community was thrilled in 1993 when the FDA announced approval of the first drug that addressed the disease instead of just symptoms. Approval of Interferon B opened up a whole new world of possibilities for MSers. In the next few years, a family of drugs -- Avonex®, Betaseron®, Copoxane® -- and later, a fourth option -- Rebif® -- became standard treatments as disease-modifying medications for Relapsing/Remitting MS. These standard medications are known collectively by their initials -- the CRAB drugs.
I was first diagnosed before that big announcement. There was no medicine to prescribe for me, but my neurologist assured me there was something in the works that would be just great for me. A few years later Interferon B was approved, but there was a limited supply. Although thousands of MSers were anticipating their trips to the pharmacy, a lottery system was developed to select the lucky few who would actually get the prescription. By the time Betaseron was generally available, I was no longer a candidate because I was slipping into the advanced stage of the disease. What now?
Fast forward to today. Approved drugs for Relapsing/Remitting MS are available, but there is still a lack of treatments for progressive MS types. I currently take no disease-modifying drugs.
Regardless of the type of MS, treatment must still include symptom management. Before there were disease-modifying drugs, MS was treated one symptom at a time. Now there are treatments for the entire disease, but we cannot forget the symptoms. The National MS Society reminds us that overall health and wellness are also important, even with a chronic disease. This applies beyond the physical, to emotional health and a first-rate quality of life.
Health Central has a good description for available MS medicines. Most of them have been approved specifically for the relapsing/remitting type of MS. Many of us have a progressive type, and we could benefit from some type of medical treatment, too. What is available for us?
Secondary Progressive (SPMS)
MSers who are slipping into an advanced stage often continue the treatment plan they were on before the progression began. Only two drugs, Betaseron® and Novantrone®, are approved specifically for SPMS, but these are valid only while there are still relapses.
After relapses completely stop, treatment is ineffective, and there is often no official treatment. However, patients who have been taking Betaseron® are sometimes started on a program of Tysabri® or Novantrone®. Novantrone®, a chemotherapeutic agent, is the only medication that has been approved by the FDA specifically for SPMS, even after relapses have stopped.
Primary Progressive (PPMS)
Generally, PPMS responds poorly to treatment that seems to work for other types of MS. That is because the disease course is more nerve degeneration than inflammation. The National MS Society tells us there are no drugs approved specifically for Primary Progressive MS.
Many MSers with PPMS are prescribed medication that is approved for RRMS. Copaxone® seems to be popular as a choice in this case.
David Madison, an MSer with PPMS who is a member right here on Health Central tells his story:
"I took Rebif® immediately after my diagnosis. . . . About the first thing I asked them was whether they were conducting any studies in which I could participate. They were doing one with Rebif®, so I jumped in right away. Now the drug is not supposed to cure anything, but instead slow you down from getting worse later. It is also supposed to be for remitting relapsing MS, and mine's primary progressive. Initially we misdiagnosed me because my rapid progression looked like a relapse. I stayed on Rebif® for the year of the study and another six months of follow-up. Then I asked if there was another medication, because the continued rapid slide strongly argued against Rebif® stopping future progression. We tried Copaxone®, which I am on to this day.. . . It seems to have the same concept as Rebif®. Insurance pays the entire $23,000 a year cost with zero co-pay."
Progressive Relapsing (PRMS)
PRMS, considered a sub-type of Primary Progressive MS, has that extra characteristic of relapses that seems to make all the difference where MS medication is concerned.
All the CRAB medications as well as Tysabri® and Novantrone® are approved by the FDA for all forms of relapsing MS, so the MSer with PRMS, which has relapses, is included. If the CRAB drugs do not control the disease activity, Tysabri® or Novantrone® are recommended.
We must remember that these drugs are not a cure but are intended to stop or slow the progression. Hopefully, when taken during the Relapsing/Remitting stage they delay the beginning of progression. With the progressive types, the drugs are intended to ensure the progression is as slow as possible. This is good, or at least it is the best we have.
I did not attempt to cover drugs that are used specifically for symptoms, as they typically cross MS types and work as well for progressive types as they do for relapsing/remitting MS. I am anxious to learn of new treatments for progressive MS. There are therapies that have not been approved by the FDA and are not designated by types of MS. Are they worth trying? Some seem to be.
There are ideas that sound simply outrageous, such as caron monoxide, an odorless, toxic gas, goat serum, and even worm eggs. These are all actual research topics. An MSer in pain or who is feeling hopeless may be willing to try anything to stop the pain or just make things better.
There are some things that, while not curing or slowing MS, actually make the patient feel better, if only for awhile. Some of them have been mentioned here. Patients often turn to complementary and alternative therapies because of the high rate of side effects and low levels of satisfaction with conventional treatments. Here are some non-traditional treatment choices.
There are other types of medication or substances that can be taken for help or relief.
* LDN (Low Dose Naltrexone) The drug has a great deal of anecdotal evidence that says it is effective in stopping new exacerbations. It has been approved by the FDA for other conditions, but not MS, so it is not readily available. There have been no clinical trials, and without them, doctors hesitate to prescribe this medication. Because the manufacturers and doctors have not banded together to perform a clinical test, potential patients have a petition to fund and perform that test. Here is an interview with an MS specialist.
* Marijuana - For MS, marijuana is recognized to reduce pain and even the incidence of spasms. Medical marijuana, considered helpful for many conditions including MS, is increasingly gaining credence, even in the conservative U.S. The NMSS publishes information on their web site, and the last vote in the U.S. Senate came closer to passing than ever before. Currently, twenty U.S. states have legalized medical marijuana (13), passed compassionate marijuana laws (2), or have legalization in the works (5).
* Vitamin D - It is strongly believed MS and vitamin D are a beneficial match as it reduces the chance of exacerbations. There seems to be a geographic distribution that shows MS is more prevalent where the sun, a major source of vitamin D, is not so tropical. Up to 80% of MSers have insufficient vitamin D levels.
MS steals our ability to move, but exercise reduces that effect and also helps us feel better.
* Resistance exercise - Studies have shown that resistance exercising, that is weights with repetition, result in significant improvement in strength and endurance.
* Yoga - Many MSers have found yoga beneficial, physically, emotionally, and spiritually. A slow, deliberate pace of achieving the postures, deep breathing and meditation is especially helpful.
* T'ai chi and Qigong - These rate high as an MS therapy. They especially help to reduce stress and maintain balance.
* Massage - A good therapeutic massage works toward maintaining flexibility and reducing spasms.
* Deep breathing - Breathing deeply, really taking slow deep breaths -- not gasping -- improves fitness and digestion.
Other types of therapies address particular symptoms, and make the patient feel better overall.
* Cooling Therapy - Uhthoff's Phenomenon or heat intolerance affects 80% of MS patients and causes a temporary worsening of symptoms. Cooling therapy eases the problem, if only temporarily.
* Hippotherapy - Horseback riding entails rhythmic, repetitive movement and is used for therapy for people with movement dysfunction.
* Music therapy - Music therapy interventions can be designed for individual clients with disabilities, helping alleviate stress and enhance memory.
Be sure to check out the Health Central's treatment notes, including drug information and alternative treatments.
I often say there is always hope. It looks as if that may be one way to feel better, too. The June edition of Reader's Digest cites a Women's Health Initiative study. The study concluded that optimists are 14% healthier than pessimists. Optimism feels good, and it's more fun. Try it!
Next I will talk about clinical trials for progressive MS.
Notes and Links
CRAB medications - Copoxane®, Rebif® Avonex®, Betaseron®
Health Central - review of MS treatments
Review of medication by doctor who has MS
Meds - drug information last updated May, 2009
Drug treaatments - lists drugs for the disease and for symptoms; last updated Jan. 2008
NMSS - general information
MSAA - general information
Revolution Health - discussion of Novantrone®
Revolution Health Treatments and Drugs
Published On: June 03, 2009