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- Dr. Daniel Kantor, MD BSE
Medical Director
Neurologique

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Options ... alway more

I received this excellent question on the MSF forum, that I thought would interest a lot of you:

Question:

I have been diagnosed for 9 years now and am running out of options for treatments. I was on Avonex for the first 5 years until my antibody count went to 121 which was way above the high count of 60. I was switched to copaxone and was on it for 1 year but had to stop due to severe allergic reactions. I was on pulse steroids for a short time during transition to Tysabri. I have been on Tysabri now for 16 treatments but was just told I have to get off due to my Dr., whom I respect whole heartedly, does not want any of her patients to go past 14 treatments due to the PML starting to show up after 14 treatments, not before but after. I am being retested for antibodies to avonex to see if I can go back on it but other that that as far as I am aware there is only a daily pill left and it is not ever FDA approved yet. I have also been told that the pill is not a disease modifying treatment.

Is there anything else you are aware of that I can ask about or would I be just as well off to go back to pulse steroids quarterly?

Answer:

Thank you for the excellent question, which I am sure resonates with a lot of people in this online community.

[Thank you to the MS Foundation for encouraging and hosting such a forum]

Since your neurologist seems quite aware of the latest data, I am just going to give broad treatment strategies, and you can discuss those with your doctor:

The FDA disease modifying agents for MS are:

1. Beta Interferons:

a. Avonex (interferon beta-1a in the muscle)

b. Rebif (interferon beta-1a under the skin)

c. Betaseron / Extavia (interferon beta-1b under the skin)

You have already been on Avonex, which is the medication least likely to cause neutralizing antibodies, so we may presume that Rebif and perhaps Betaseron / Extavia would also (as these neutralizing antibodies are often cross-reactive to both types: 1a and 1b).

The problem is that there isn’t consensus about what these “neutralizing” antibodies actually mean: do they actually neutralize the effect of the medication or do they just go up and down.

2. Glatiramer Acetate (Copaxone):

You have already been on it and had some sort of reaction, the question is whether it was an actual allergic reaction or if it was the hive-like skin bumps that we see with Copaxone use.

3. Natalizumab (Tysabri):

You have already been on it, and your doctor feels strongly that you should stop. The question is whether she wants you to stop indefinitely or whether she is suggesting a drug “holiday.” Many neurologists presume that stopping for (usually) 6 months may reduce the risk of PML back down. The problem is that we don’t know if that is true (one of the original people with Crohn’s disease and PML had been on and off the medication) and the question of what you should be on in the meantime.

4. Mitoxantrone (Novantrone):

This is usually used for worsening RRMS (relapsing-remitting MS) or for SPMS (secondary-progressive MS). The issue with this medication is that it is a chemotherapy and there are potential side effects of infection, blood cancers and there is a lifetime limitation because of the risk of congestive heart failure.

With that said, there are experimental medications and off-label medications we use.

A few of these trials may allow you to be on them, despite your exposure to Tysabri, but usually not. In terms of off-label medications, we generally use lower dose chemotherapy medications, which your neurologist can discuss with you.

Now, the question of oral medications. One of those medications (FTY720 or Fingolimod or Gilenia) has been submitted to the FDA for possible approval, but it is not yet approved or available. The issues with the newer medications, are just that: they are new. This means that we don’t yet know what all the possible side effects may be (such as cancer and infections).

You mentioned that there is an oral medication that is not a disease modifying agent. I presume that you are referring to Dalfampridine (Ampyra). This medication is not a disease modifying agent, but it is FDA approved and available for improvement in walking speed. See: http://bit.ly/a8yB0a

In terms of steroids, some people use pulse IV Solumedrol (or oral Prednisone or into the muscle/under the skin ACTH), and there was a recent study published about adding monthly pulse steroids to Avonex, but it is not clear that steroids alone are enough and there are potential side effects (bone health problems, insomnia, agitation, psychosis, acne, blood sugar elevation etc.).

So, the options that your neurologist may be considering are:

1. Pulse steroids and a beta interferon while waiting to restart Tysabri.

2. Beta interferon with or without pulse steroids.

3. Retrying Copaxone (depending on what that reaction was).

4. Novantrone.

5. An off-label use of a chemotherapeutic medication, such as Cyclophasphamide (Cytoxan), Rituximb (Rituxan), Alemtuzumab (Campath), etc.

As you can see, there are a lot of options that you and your neurologist may want to consider in your partnership in your MS care.

We will soon be releasing online video presentations concerning such strategies, which you will hopefully find useful. When these are ready, we will be sure to let everyone on this forum know.

All the best and please let us all know (if you are comfortable doing so) what you decide on.

- Dr. Daniel Kantor, MD BSE
Medical Director
Neurologique

info@neurologique.org
www.neurologique.org