MS Drugs: When to Start, When to Switch and What to Do During Pregnancy

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Lynn

Webcast:

 

What to Expect from Your MS Therapy

MS Drugs: When to Start, When to Switch and What to Do During

Pregnancy

Trevis:

Our first question is coming in via e-mail from Brenda in Dallas.

Brenda writes, " I recently had to stop my interferon therapy because

I'm pregnant, and I'm not currently on any drug. Is there anything I can

take for my MS while I am pregnant? " Dr. Heyman?

Dr. Heyman:

There are things that can be done. One reassuring thing is that

multiple sclerosis in general does better during pregnancy with a

decrease in the exacerbation or attack rate. There’s not much change in

the first trimester. But in the second trimester, the effects get fairly

big. And by the third trimester, there's actually about an 80 percent

decrease in exacerbation or attack rate. So during the pregnancy, many of

my patients have told me, and many studies have verified, that symptoms

are less. Not everyone, but some women say, “I felt normal again. It was

great.”

But none of the FDA approved long term MS medicines are available during

pregnancy. If someone's been on interferon and stopped, the effects don't

wear off within a week or two, particularly if they've been on the

medicine for a year or more. There may be some protective effects that

last for more than a month even.

If someone requires therapy during pregnancy, neurologists may use the

corticosteroid Solu-Medrol (methylprednisolone) sometimes. And if your

disease has been particularly active, you would talk to your neurologist

about a schedule of either Solu Medrol or for a non FDA approved

indication, something called intravenous gamma globulin, or IVIG, which

is safely used for other immune diseases during pregnancy. So there are

options if necessary. For most people, they do not require or go on any

of the therapies.

Trevis:

I have an e-mail from Gail in Inglewood, California. She wants to

know when it's possible that oral meds will replace those needles. I know

you talked about that three year window, Dr. Heyman. Is that for oral

drugs as well?

Dr. Heyman:

Yes. Some of those studies are oral agents. So if we have the answer

in three years, presumably in about four years they would be available,

if the answers are good enough and satisfactory to the FDA.

Trevis:

We have a question via e-mail from Anna Christina asks about

mitoxantrone (Novantrone). It's administered every three months for a

couple of years. And she says, " I'm on my fifth infusion. My

neurologist decided to half the dose because the white blood cell count

is dropping too low, and I'm also experiencing bladder symptoms. " We

didn't talk much about mitoxantrone, so could we talk a little bit about

that one, doctor?

Dr. Heyman:

Certainly, I think it's good to bring up the fact that there is

another medicine out there that's not Tysabri (natalizumab) or one of the

ABCR drugs. Mitoxantrone is also called Novantrone. It is now available

generically [and is FDA-approved for use in MS]. It is a chemotherapy

drug [i.e., it was originally developed as a cancer drug, and, in

addition, it is not a biologic]. It is also used (FDA-approved) for

leukemias, prostate and other cancers. But it's used much differently in

MS. It is given every three months by an intravenous infusion. Side

effect wise, it’s usually tolerable – some nausea. But the difficulty we

have using a chemotherapeutic in many people with MS is that there are

potentially bigger effects regarding fertility, pregnancy, fathering

children, and there's a risk of cardiac (heart) muscle damage. And while

we initially felt that was predictable [i.e., the heart damage], it's

become a little less predictable. And it's something your neurologist

will probably be watching pretty closely by doing periodic heart function

tests. [Medical editor’s note: Because of the risk of heart damage, there

is a lifetime limit on the total amount of Novantrone that one can

receive even if no damage occurs during treatment.]

The other risk of Novantrone is leukemia. Neurologists have different

opinions about what the risk of leukemia would be, I would say about one

in 400.

[in summary,] it's got a higher level of risk, but in studies it was a

pretty effective therapy with a big effect on exacerbations and solid

effects on disability on MRI. But it was a much smaller study compared to

the ABCR drugs and, particularly, compared to Tysabri. There were only

about 60 patients in each treatment group. But the half dose in the study

actually looked pretty good, and on a half a dose your risk of almost all

the side effects is probably less.

Trevis:

And you could probably stay on the drug longer because it has a

maximum lifetime dose, not a maximum time on drug, is that correct?

 

Dr. Heyman:

Yes. So if you can get by with a lower dose, I see that as a

plus.

Trevis:

This question is coming from Karen in Ballard, Washington, " If I

have an exacerbation while on Tysabri, what treatment can be used to stop

the exacerbation? Can IV (intravenous) steroids be used? "

Dr. Heyman:

Yes. And that was done in the studies of Tysabri. We do have

experience from the Tysabri studies that using the methylprednisolone

(Solu Medrol) is something that was safely done in the study. The

patients who had the

 

PML (progressive multifocal leukoencephalopathy), the brain viral

infection that we so seriously worry about with Tysabri, were patients

who were on Avonex (interferon beta 1-a) with Tysabri. The patients who

were on Tysabri alone, including some of them who did have steroids, were

not found to have that infection. We're hopeful that we can safely do

that.

And when I have patients on Tysabri who have attacks, I consider the

steroids an option. But it doesn't work fully in everyone, and sometimes

a neurologist might consider testing for antibodies to Tysabri as well.

 

Trevis:

There's a question from Kingston, Massachusetts. Does switching

medicines negate the previous medication's effect? Is there a limited

time of effectiveness while taking one of the ABCR drugs? If I switch

therapy, how long will it be before that new therapy helps me? "

 

Dr. Heyman:

When it comes to switching medicines, I think it's appropriate for

your neurologist and you both to decide if this is because it's not

working well enough or because of side effects. If it's an interferon

that's not working well enough, you'd want to know if you had antibodies

against it or not. So if it's not working well enough because of MRI

lesions, clinical disability progression or other factors, you put it on

the back shelf for now, but you may find a different way to use the

medicine in a particular patient later.

But I also discourage frequent changes because the medicines may take a

little while to ramp up, particularly the Copaxone (glatiramer acetate)

may take a little longer to get started. And you don't want to give up

too quickly. So pick the medicine that you and your neurologist think

will work and do your best to make it tolerable, control the side

effects, and give it at least six months, if not a year, to decide if

one's working or not working.

Trevis:

Steve in Lansing, Michigan asks, " I just feel like I'm thinking

slower, but I've had the neurologic tests, and there doesn't seem to be

anything wrong. Is it possible that I'm just feeling like this is

wrong? " Dr. Benedict?

Dr. Benedict:

Is there any sign of this other than the feeling that he's slower? Is

he having any difficulty with his job? Does anyone else notice this

problem?

It could very well be that he's experiencing what's called cognitive

fatigue. As he's going through the course of his day, and he's using his

mind to do various tasks, he's feeling more tired than the average

person, but he's actually able to perform as well as he needs to. He

mentioned that he's had some neurologic tests. If those were

neuropsychological tests and they were normal, then chances are that he

can be pretty assured that he's in pretty good shape because

neuropsychological testing has more false positive problems than the

other way around.

Trevis:

We have a question from Shawnee, Kansas that says, " I've been

reading that the contrast solution used in MRI is bad for you. Should I

be concerned about getting an MRI once a year as my doctor

recommends? "

Dr. Heyman:

Yes. There have been some reports, and it's fortunately not common.

The

 

MRI (magnetic resonance imaging) dye, or contrast as it's called,

does appear to still be much safer than the

 

CT (computed tomography) scan or the

 

IVP (intravenous pyelogram) dye used for the other type of kidney

scan. Particularly patients who may have renal or kidney problems, they

may have a type of reaction that can involve the tissues underneath the

skin, and there can also be kidney issues. And if someone has ever had a

reaction, they should talk it over with their neurologist as well as the

MRI center. Sometimes you don't use contrast, and we're looking at ways

on MRI to avoid the expense and needle stick.

Trevis:

What exactly is that contrast dye doing, Dr. Heyman?

Dr. Heyman:

What we look at with the contrast dye is to see if the blood brain

barrier is open. That same barrier that the cells sneak through to cause

damage is where the gadolinium (the contrast agent) leaks through. So if

we see that someone has contrast dye showing up in the brain, we presume

that that's an area that has been recently or actively attacked, usually

in the last two or three months and sometimes even just the last week or

two. So it gives a neurologist an indication that there may be

inflammation ongoing, or the disease is still active.

Trevis:

I have an e-mail question from Mary Pat in San Diego. She asks if

there are any treatments for cognitive fatigue. And for those of us who

don't know what that is, doctor, can you explain?

Dr. Benedict:

It's the fatigue that you experience working your mind hard rather

than your body. And it's very common in MS for people to experience this.

Sometimes it can actually affect cognitive functioning, although more

often it doesn't. Nevertheless, it’s very unpleasant. Some of the

medications that are used for this are also used to treat sleep

disorders. And the most common one is Provigil, modafinil is the generic

name. There's been a recent study looking at the effects of that

medication on cognitive functioning, and there's a possibility that there

might be some small effects that are beneficial there.

So I would recommend that this person talk to their doctor about trying

Provigil (modafinil). If not Provigil, then amantadine (Symmetrel) is

another commonly used medication for this. For some patients, it really

helps a lot, for others, it doesn't have any effect at all and is a

matter of careful experimentation.

Trevis:

So cognitive fatigue occurs because your brain is working so much

harder to do what everybody else does normally?

Dr. Benedict:

Yes. When an MS patient is doing a task under FMRI – the Functional

MRI machine is measuring how much of their brain is active – what we find

is that the MS patient is able to do very often at least the same amount

of work that the healthy individual is able to do, but they're using more

of their brain to do that same task. And so the brain is working harder,

hence that feeling of fatigue.

Trevis:

We have a caller on the line from Houston, Texas. Molly, you are on

HealthTalk.

Molly:

I have had MS for many years, and I was wondering what they suggest

for someone who was diagnosed way before any of the drugs came out.

 

Dr. Heyman:

It's a good question because many people have had MS long before any

of these agents existed, and all the emphasis is on get on treatment

early and stay on treatment. I like to determine if the disease is still

active, and there are different measures of that. And certainly, we look

at how the exam is changing. Have there been clear-cut exacerbations that

weren't related to infection or heat or overuse?

Many neurologists feel that if the MRI shows new lesions showing up or

new enhancing lesions, it means there's a lot of inflammation going on,

and it may be worthwhile to get started on one of these medicines.

Whereas, if somebody has changed very little over 10, 15 or 20 years and

the MRI's not changing, I might concentrate on healthy lifestyle and

exercise and try to get this disease or spasticity or bladder under

better control. A worthwhile question to ask your neurologist is, “What's

the payoff likely to be for me if I go on one of these medicines?” And no

one has the crystal ball, but I think the factors of new attacks, how

quickly you're worsening or changing and MRI inflammation are all things

that help predict that it's going to be more worthwhile to do one of the

ABCR drugs or Tysabri.

Trevis:

We've got a question from Debbie in Pennsylvania, “Can activities

like crossword puzzles or other memory or intellectual games help keep

our cognitive abilities from deteriorating as quickly?”

Dr. Benedict:

The answer isn't known definitely. But given what we know about

what's going on in the brain with functional imaging studies, the degree

to which the brain has potential for restoration, I would say yes. It

doesn't matter so much what the person is doing, as long as they are

trying to learn more information and challenge themselves intellectually.

If they like doing crossword puzzles, then great, do the crossword

puzzles. But if they don't like doing crossword puzzles, then don't do

the crossword puzzles. You needn't sign up for a fad like program in

order to exercise your brain. Reading a book and trying to remember what

you read is good enough.

We have found that the normally aging brain is more plastic than we once

thought, and consequently seniors are being encouraged to do things like

this.

Trevis:

Barbara in New York is asks, " How long must I be off my

interferon drug before switching and starting Tysabri? "

Dr. Heyman:

There is no absolute rule. Some neurologists are conservative and

require up to three months. Others may be off only a week or more. Some

of the variables to talk about with your neurologist are if you've had

prior infections or if you're running a lower white blood count because

of your interferon. There are other variables that come into play, but no

one has a certain answer. I'm less inclined to wait, particularly if

someone is getting worse quickly. If it’s someone who is very cautious

about things and worried, I may wait longer.

Trevis:

Mike from Seattle e-mailed our final question for the night,

" Why do I have more MS symptoms in the summer? Is there some sort of

correlation between heat and exacerbations, or are they

pseudoexacerbations? " Dr. Heyman?

Dr. Heyman:

Typically, neurologists think of pseudoexacerbations when the heat or

humidity is higher, and people's core temperature runs a little bit

higher. People tend to be more physically active in the summer, so they

may notice their deficits more than in the winter when they're hunkered

down with that good book. When people get out and about, sometimes they

do pick up more coughs, colds and infections too. We do tend to see some

peaks of exacerbations, but I find that's more often spring and fall,

just about the time other infections are going around. Infections,

besides causing the pseudoexacerbations, can be trigger for real

infections too. You do what you can, and that's usually avoiding the

crowds of people who are sneezing and coughing and hand washing.

 

Trevis:

Do cooling vests help? Does cooling the body externally help at all

in the summertime?

Dr. Heyman:

For many people, they do help. And the cooling vests have come way

down in price and in weight. And it's something that's a nice non pill

thing to do. Try a cooling vest. A nice cold beverage will lower your

core temperature. And if you notice the vision becomes better, you've got

a nice easy treatment that you can share with your family members.

 

Trevis:

Dr. Benedict, are there any final thoughts with which you'd like to

leave our audience?

Dr. Benedict:

The take home message is that most or nearly all patients with MS

will have some problem with depression or cognitive function during the

course of their illness. That's a normal thing to experience. It's

important to be open with your doctor about what's happening and to

explore with him possible medications that might give you some

symptomatic relief.

Trevis:

And, Dr. Heyman?

Dr. Heyman:

Find a medicine that helps get your MS under control. Medicines are

one aspect, but also find a way to live better and enjoy life more.

 

Trevis:

Well, my heartfelt thanks to both our panelists for your expertise.

From all of us at the studios in Washington and all of the HealthTalk MS

Education Network, I'm Trevis Gleason. We wish you and your families the

best of health. Cheers.

This transcript was edited from the original audio for clarity and

readability and may not exactly match the

 

audio version of the program