Just ask

Hinson-Smith, Vicki

Q&A from the 1999 MS Teleconference

Critical questions, asked by persons with multiple sclerosis (MS) and answered by medical experts, were recently broadcast to more than 620 sites across the United States and were also webcast to Internet participants around the world. The 12th Annual MS Teleconference, sponsored by the National Multiple Sclerosis Society (NMSS), was titled “It’s Your Call: Making Treatment Decisions.” The teleconference and webcast featured Randall Schapiro, MD (Fairview Multiple Sclerosis Center, Minneapolis, Minn.); T. Jock Murray, MD (Dalhousie Multiple Sclerosis Center, Halifax, Nova Scotia); and William H. Stuart, MD, and Ismari Martinez Clesson, RN, CRRN (both of Shepherd Multiple Sclerosis Center, Atlanta, Ga.). Real Living with Multiple Sclerosis’ coverage continues, with questions answered by Dr. Schapiro.

Q Please name some specific treatments for optic neuritis.

A Optic neuritis is the inflammation of the optic nerve. The optic nerve, which can be seen by looking into the eye with an ophthalmoscope, is actually a highly myelinated part of the brain. Inflammation of the optic nerve is often an early sign of MS. Optic neuritis is very common among people with MS and usually heals without much treatment. If visual acuity is significantly affected, high-dose corticosteroid.treatment, such as intravenous methylprednisolone or high-dose oral steroids, may be recommended for 3 to 5 days, followed by tapering of the medication. Studies indicate that oral steroids alone are not usually effective and LV steroids may be needed. If the person with MS is not using oral steroids and is experiencing eye pain, nonsteroidal anti-inflammatory drugs are also quite helpful. Antiseizure drugs, such as gabapentin (Neurontin) or carbamazepine (Tegretol), may be helpful. There are many ways to treat optic neuritis, but often the best thing [a health care provider can] do is reassure, watch, and wait.

Q Can anything reverse the effects of MS?

A Certainly that’s what we all wish for, and there are current research studies indicating that potential. Looking at the research on stem cells, we wonder whether that could eventually be the way to remyelinate the nervous system, not by stem cell transplants but by surgically implanted new cells that differentiate into cells that make myelin. I tell my patients that, in order to get better, the first thing they have to do is stop getting worse. And the ABC drugs (Avonex [interferon beta-1a], Betaseron [interferon beta-1b], and Copaxone [glatiramer acetate]) are a big step toward not getting worse, The body does reverse and remake myelin. The oligodendroglia cells slowly pump out myelin, and we’d like to promote that. There are new agents being studied that do promote remyelination, and though it will be a while, I do see it down the road.

Q What is the connection between bacteria and MS?

A Many have wondered about the cause of MS. When you look at its epidemiology– factors in the environment that influence disease-it looks very much like a viral infection. Nobody has ever found the virus however, and it’s not because they haven’t looked. Viruses have been found. Recently, you may have heard about the human herpesvirus-6 (HHV-6) being associated with MS, but the jury is still out. We don’t really know whether that association is there.

Investigators have also looked.at immune responses in spinal fluid and found an excessive amount of the bacteria chlamydia. The immune systems in persons with MS are revved up and seem to show responses to virtually everything that we look for. Until there’s more evidence, we have to question if this isn’t just a phenomenon-something that happens simply because the immune system is overactive.

Most people with MS have taken antibiotics at various times, and I’ve never seen the course of the disease change because of antibiotics.

Q What about using the ABC drugs to treat atypical MS, such as in someone who has stable MS or someone who has had a history of symptoms but still remains undiagnosed?

A It’s not my opinion that everyone with MS should be treated with one of these drugs. I believe these drugs are designed to stabilize the disease. The people who criticize me for taking this stance say “You can’t know the disease is stable. The MRI [magnetic resonance imaging] scans may show that the disease is active even when people appear stable.” There’s truth to that, but we also know that there are a number of people with MS who do very well without being on any of these medications.

We need data, we need information, we need time. We’re delighted these drugs are available. In my own practice, if a person with MS is stable, I tend to want to watch them and not introduce new medications. The patients know me, and they can call me if they’re changing. But if their disease is the least bit active and I’m concerned.about the possibility of disability, I’ll prescribe one of the ABC drugs-we want to treat people early, not late.

Q Have you had any experience with the drug Novantrone (mitoxantrone) for MS?

A I’m familiar with Novantrone but have no personal experience with it. This is one of the newer drugs for persons who are refractory to treatment. I think it has some exciting possibilities, but it also has some significant adverse effects. Novantrone is a medication used to treat cancer pain. It’s been studied for use in MS and has possibilities for people who aren’t responding to standard forms of therapy.

Q Are there test data on the effectiveness of the ABC drugs on newly diagnosed patients older than age 65?

A No, but I believe age groups are very artificial in defining the use of the drugs. We would certainly use it for persons older than 65 if they fit the MS criteria.

Q If someone was initially diagnosed with relapsing-remitting MS that’s become secondary-progressive, would you still suggest the ABC drugs?

A About 60% to 75% of people with MS begin with a relapsing course, but half of these eventually stop relapsing and start progressing; they become secondary-progressive. Data show that ABC drugs work in relapsing MS. As those with MS begin to transition from relapsing to progressive, I believe they should be treated with one of these medications. If they become secondary-progressive, data from Europe show that Betaseron slows the disease progress. These medications work with a variety of MS types, and we have to use clinical experience, common sense, and reason.

Q What can you tell us about hormone research?

A During pregnancy, most women with MS do better than at other times. It’s logical to think that’s because of hormones. I wonder whether it may be because of the immune system. The pregnant woman’s immune system identifies the fetus as a partially foreign substance and slows down to bring the baby to term Slowing down the immune system may be what allows pregnant women to do better with their MS than when not pregnant. If we could mimic the benefits of pregnancy, we might better control the disease process-even for men.

Q Is there a relationship between shingles and chronic pain?

A There is a definite relationship. Shingles and chicken pox are both from the herpes zoster virus that lives in the nerve cells. This has nothing to do with MS; many humans get chicken pox virus. Shingles can cause painful postherpetic neuralgia or dysasthesia-a burning that mimics neuritic MS pain. The same kinds of medicines used to treat MS pain– antiseizure drugs and creams-are used to treat shingles.

Q What about drugs for cognitive difficulties?

A About 50% of persons with MS experience some cognitive difficulties. The difficulties fluctuate and are often complicated by fatigue, stress, or fever. We’ve learned that people can stay intellectually active despite MS, and we recommend looking at ways to compensate for cognitive difficulties.

Q If an MS patient tests positive for HHV-6, would it be beneficial to try a long-term course of antibiotics?

A No. It wouldn’t be of value because antibiotics don’t work with viral infections. Another question would be whether an antiviral agent would be of value. Most people will test positive to roseola, which is a very common virus that almost every child gets; we all have this virus within us, but it doesn’t mean it’s causing MS. It’s the immune system that’s activated and causing demyelination. Killing whatever virus is present would probably have no effect on the immune system.

Q What about recent research concerning brain atrophy?

A We’ve learned that, in studies of the brain size of persons with active MS, shrinkage of the brain occurs less in some of the people who take one of the disease-modifying drugs.

Q Do people being treated with high doses of steroids during exacerbations ever stop using the ABC drugs?

A There is no reason to stop the medication during steroid treatment. The drugs work in a complementary way. When we use highdose corticosteroids, we want the potent antiinflammatory effect of the steroid to take the swelling out of the nervous system.

Vicki Hinson-Smith is a writer and editor who lives and works in Massachusetts and New York, where she specializes in biomedical communications. She has MS.

Copyright Springhouse Corporation Dec 1999

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