Getting Along with Your abcs.

Avonex, Betaseron, and Copaxone. The new ABCs of multiple sclerosis.

All are approved by the FDA for people with relapsing forms of MS. All are self-injectables. All cut down the number of attacks (or exacerbations) a person with MS would otherwise have. In other words, people using these drugs are acutely sick from their MS less often and for shorter periods. These drugs mean it is, at long last, possible to treat the underlying MS.

Dr. Henry McFarland, chief of the Neuroimmunology Branch of the National Institute of Neurological Disorders and Stroke, sees the face of MS being changed by them. "Early diagnosis combined with early and regular use of one of the new disease-modifying drugs can lead to a more benign course of MS over the long run," he said.

This opinion, supported in part by scientific studies and in part by clinical experience, is shared by the Society's expert medical advisors. They drafted the Disease Management Consensus Statement in spring 1998. [The complete document can be downloaded from the Web at www.nmss.org or obtained by phoning 1-800-FIGHT MS (1-800-344-4867), option #1, and asking your chapter for a copy.]

What's wrong with the picture?

The ABCs have problems. Some surveys estimate that as many as a third of the people who start taking one stop within 2 years. Not to switch to another, more compatible A, B, or C--but to quit altogether.

The studies and questionnaires about this come up with about the same thing. The biggest reason for quitting isn't the needle sticks, the high cost, or the sometimes nasty side effects, though each of these may stop some people. People quit because the drug hasn't made them feel better. When an obvious benefit doesn't kick in, people toss their drug.

There is a logic to it: people who take a medication naturally expect it to make them feel better. And taking the new drug sometimes does. The excitement of a new therapy boosts hope, which is the world's best medicine. The feeling of mastery from learning to self-inject is also a real up, some people say. But soon the users realize that their old MS symptoms still come and go. Eyes still blur, feet go numb, memory takes sudden trips south, or walking across the living room requires the stamina of an Olympic athlete. Then comes the knockout punch. Out of the blue, people who faithfully take their injections have an exacerbation anyway. (Remember, the data show the drug will reduce the number of attacks.)

All 3 of the pharmaceutical companies supplying these drugs try hard to inform people that their products do not cure MS. But their advertising doesn't exactly shout out that a user may still have ongoing symptoms, plenty of frustration--plus an occasional attack.

The real advantages

Advantage number 1 is: A, B, or C are the best MS fighters we have so far. The 3 drugs have not been directly compared in clinical trials, but from the data, the Society's Medical Advisory Board considers them to be about equal in slowing down the underlying MS. None of them is a cure.

Advantage number 2 is: A, B, or C work to slow the hidden disease process. The catch is that this process is, indeed, hidden. The drug may be doing its work while the person who is talking it feels lousy. A, B, and C have all demonstrated they not only reduce the number and severity of MS attacks, they can dramatically reduce the number and activity of MS lesions (or damaged areas) inside the central nervous system.

It turns out that early on MS is almost continually active--in silence. MS specialists didn't suspect this until the advent of MRI (magnetic resonance imaging) in the early 1980s. Today, enhanced MRI, plus an alphabet soup of advanced imaging technologies with names like MRS, PET, and MTR, are uncovering more and more about what MS is doing within the brain. No one who has MS can feel this activity. To make matters more complicated, there is no direct one-to-one correlation between having less lesion activity and having fewer symptoms. Nevertheless, the experts now believe that MS becomes noticeably worse only after the central nervous system has run out of ways to duck, weave, and compensate for central nervous system damage.

As Dr. Barbara Giesser, of Arizona Health Sciences Center, put it, "An A, B, or C drug is a kind of insurance policy against ongoing and future central nervous system damage."

What A, B, or C can't do

Even though people who take A, B, or C have a chance at developing fewer permanent losses, they still have to deal with symptoms. Fatigue, unreliable bladders, poor vision, spasticity, and other problems may even worsen. A, B, or C do nothing for them. Fortunately, there are therapies for managing them. And nothing substitutes for a "wellness" approach to MS, emphasizing good diet, good friends, stress management, exercise, and fun.

Looking for the carrot

New information about "silent" MS includes compelling data about severed nerve fibers. Fear is a powerful stick driving people to take medication. But in the long run fear is a poor motivator. It's the carrots--the positive rewards--that help people stay with a program over time.

For Phil Polansky, a young Manhattan travel agent, the idea of taking his drug "basically stinks," but he's absorbed it as part of his daily routine. "It's sort of like shaving. I do it in the morning, and, hey, it's done," he said. His carrot is the opportunity to do something active. "I feel that doing anything positive about MS is the right way to go. That's also why I took peer counseling training and got myself involved in chapter advocacy," he said.

For Carlene Ragle, a retired nurse in Ohio, the decision to use one of the drugs is "a no-brainer." Her carrot is knowledge. "Know your enemy is my motto. I keep on learning about MS. I understand the drug isn't perfect. I just owe it to myself and my family to make the most of what we've got." Mrs. Ragle has another advantage--at least she calls it an advantage. She was diagnosed with diabetes when she was only 16 and has lived for 35 years with daily insulin injections. When MS was added to her plate in 1991, "I was already a human pincushion," she laughed.

"My mother didn't cripple me when I came down with diabetes as a girl," she said. "She gave me freedom to live. And my husband, who was my high-school sweetheart, has been with me through everything. So I've had family, friends, and faith.

"But I've also had the drug side effects. They slowly became less, but they still pop up. My drug helps me keep going--and, hey, it's harder to hit a moving target."

Both Mr. Polansky and Mrs. Ragle have physicians who encouraged them to go on disease-modifying therapy, and this support was very important to them.

Mary Ann O'Driscoll, a freelance writer in Utah, had to go it alone. She met a lukewarm response when she showed her doctor a news article about the Society's Disease Management Consensus Statement. After ordering more tests, her doctor finally handed her a prescription. "I felt like I was getting an upgrade on my computer," she said. "You know how the guys at the computer store just look at you, and don't really answer your questions?"

In fact, Ms. O'Driscoll thought a pharmacist would teach her how to self-inject. Ultimately, the drug company's patient-support program came to her rescue and sent a nurse to her home for injection training. The support program intervened again to get her health insurance in synch with a pharmacist willing to accept reimbursement rather than up-front payment.

"I fought long and hard for the privilege of being alone with a needle," Ms. O'Driscoll said. "I'll give it up when something better comes along."

Needle tips!

Most people who use an A, B, or C drug find ways to incorporate a murine needle stick into their lives. But there are some tactics to make injecting medications a little easier.

* Learn good injection and skin-care techniques from your health care practitioner.

* Have a support person who can help. Those using a subcutaneous technique sometimes need help with hard to-reach sites--or there are days when they just need a break. Some physicians recommend that a support person always do the intramuscular injections.

* Don't let anyone rash you or your support person.

* If you are bothered by pain, make an appointment to double-check your technique.

* Rotate sites; using a diary to keep track of site rotation can be helpful.

* Create a "ritual" around the injection as a way of refocusing your attention. A ritual might include choosing a comfortable place, taking a bath before or afterwards, listening to music, or brewing a special pot of tea. Or you might decide to do it right before a favorite TV show. Follow the same procedures each time.

* Inject medication at room temperature. It's OK to take it out of the refrigerator half an hour before use.

* If that doesn't help, try injecting medication at body temperature. Tuck a room temperature vial under your armpit for a few minutes.

* Take ibuprofen or acetaminophen one hour beforehand. This not only will cut down on possible flu-like symptoms from Avonex or Betaseron, but should decrease injection-site pain as well.

* After cleansing the site with alcohol, make sure the skin is completely dry before injecting. If alcohol stings, alcohol-free baby wipes can be used instead.

* Before injecting, apply ice, a gel pack, or a bag of frozen vegetables to numb the site.

* Or, numb the site with a topical anesthetic. Sunblock does the trick for some people. A more potent product called EMLA (eutectic mixture of local anesthetics) is available by prescription, it should be applied 60 to 90 minutes before injecting.

* Apply something cold to the site immediately afterwards, too.

* Vigorously massage the site after injection.

* Get instructions using 2 needles, one to puncture and draw the medication, a second one for injecting because the first needle point is blunted just a bit when it is inserted into the vial.

* Changing from one needle to a second dry needle can cut down on site reactions, as the dermal layer of the skin is most reactive to medications and a dry needle only delivers medication below that layer.

* For B or C injections, use a smaller needle (27-to 29 1/2-gauge). Smaller is easier.

While few people enjoy having injections, most people adjust. If your fear of needles becomes strong and prevents you from keeping to your schedule, tell your doctor or nurse and ask for a referral to a health professional or therapist. Phobias are nothing to be ashamed of. The sooner they're treated, the better.

Easing drug costs

Each of the 3 drug companies has a financial support program, which their spokespeople describe as follows.

Avonex (Biogen, Inc.): The Avonex Access program offers assistance for people who either lack health insurance or have insufficient coverage, and who meet income and other criteria. In some cases, people will be asked to contribute to the cost of therapy or pay a delivery fee. Applications are made through the Avonex Support Line at 800-456-2255.

Betaseron (Berlex Laboratories): The Betaseron Foundation asks for insurance and financial information from applicants. U.S. residents who must pay for all or most of the cost of their Betaseron and who fall within the Foundation's income guidelines may qualify for aid. The guidelines take cost-of-living expenses into account, so people who consider themselves middle income may be eligible. Call 800-948.5777 for an application form.

Copaxone (Teva Marion Partners): Shared Solutions will first by to help people deal with their insurance company. People who don't have insurance or whose insurance provides insufficient drug coverage can apply for assistance. Eligibility for support is based on income and asset levels, cost-of-living expenses, debt load, and other medication costs. Call 800-887-8100 to learn more or to apply for the programs.

Help from other drug companies

The booklet "Free and Low Cost Prescription Drugs" lists drags whose manufacturers have patient-assistance programs. Many drugs used for the treatment of MS are included. It's available free at www.institute-dc.org or by sending your name and address with $5 to Institute Fulfillment Center, Item #PD-370, P.O. Box 462, Elmira, NY 14902-0462.

Martha King is editor of this magazine.