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Monday, July 19, 2010

Cytoxan as an MS Therapy

Written July 18, 2010 - By: Cherie C. Binns RN BS MSCN

I have had MS since the early 1970s and was formally diagnosed in 1994.   It was not, however, until 2001 when I was no longer able to walk without assistance and was legally blind, that any treatment for the disease was even suggested to me.   Since that time, I have been treated with Interferons, steroids, IVIg (Intravenous Immunoglobulin) and Cytoxan.  Copaxone was never used because I have allergies to certain dyes and preservatives and it was felt this drug, as entirely synthetic, might not be safe for me to take for that reason.   My neurologist will not use Mitoxantrone (Novantrone) or Tysabri.

When a chronic urinary tract infection would not resolve with more than a year of antibiotic therapy, I was removed from my interferon.   The thinking was that the interferon was suppressing the immune system so that I could not effectively fight the infection.   This decision came about with the consultation of an immunologist working with my neuro and primary care doctor.  Within a month of going off Rebif and being placed on IVIg weekly, the urine cultures came back clear and infection has only reoccurred once in the 16 months since then.

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Anonymous said...

i've been doing cytoxan every four weeks (just had my 6th infusion), along with blood tests/urine tests about 6 times in between. this after starting with rebif when first dx in 03, and trying tysabri and a bunch of other stuff along the way. ms has progressed slowly but steadily the whole time, and i see no improvement in symptoms with cytoxan (or anything else, but as far as i know,the goal was just slowing the progression with no improvement expected. i still have the spasticity and fatigue, both of which continue to very slowly worsen. i only do the cytoxan because, well, i guess you gotta do something. maybe it's slowing the progression down, or maybe not, who knows. not sure what the next step is.

Cherie said...

It works differently for each of us and has not been as well documented as the CRABS, Novantrone or Tysabri. And, I too, do not know what is next.

Jan Marie said...

It is my understanding that this drug can have negative affects on the reproductive ability in the patient taking it as well as damage heart tissue...this I was told when Cytoxin was part of the chemo regimen given to my son to treat acute lymphocytic leukemia. Are these not a risk at the dosage given to MS patients or are these things that need to be considered?

Cherie said...

Jan Marie,
Cancer dosing tends to be in excess of 3000mg/dose and the prescribing literature states it can cause ovarian dysfunction and amenorrhea in some people. It also states that when therapy has discontinued, this generally reverses itself. Cardiac concerns may have been voiced because of the age of your son and the dose he was on.

If you are concerned about fertility issues, none of the FDA approved treatments are advised. One generally comes off all medication when attempting to become pregnant or during a pregnancy.

Jan Marie said...


We were told that our son was at an age where reproductive capacity might not be affected by Cytoxan, but that we should know that irreversible reproductive damage was possible. This being the possibility in a male, in whom reproductive cells are normally completely regenerated every few days, I would think the potential for permanent damage in females, in whom ova are present from birth, would be even more possible.

Honestly, I don't remember what the dose was that my son was on, it has been some time..but it certainly seems more serious that just getting off the Cytoxan when trying to get pregnant. I have known other MS patients who went off drugs like Copaxone or Rebif for pregnancy and did fine, and one friend who went into permanent early menopause on Interferon. I, myself, gave birth to both of my children while having MS but before the development of the current drugs used to treat MS. Cytoxan is not like any of the other types of MS drugs, it functions differently and it's affects are very different. When one gets off Copaxone, for example, it completely clears your system in a period of time...Cytoxan can leave permanent effects and while those seem to be dose related, one can't be sure what dose is going to cause the undesirable effects for an individual.

You might read the FDA warnings posted online to find more about the bad side effects including risk of temporary or permanent sterility in both sexes.

Truly, I am glad Cytoxan has worked for you, but I think it is not a drug one should consider lightly, especially by younger MS patients who have not completed their families yet. It is not a drug specifically approved for MS and it should not be assumed that it is like the other immune suppressing drugs used for MS, because while it does has that effect, it has other effects that could be very undesirable.

Just wanted to present the other view...I wish you well in your fight with MS.


Cherie said...

Again, I am NOT recommending this as a first or second line of therapy. It is only appropriate to consider this when all else has been tried and failed. And that is generally the case in older people with MS who are past their reproductive years as I am.

You might want to go back and read my article on "Alternatives to Steroids" on this site for other suggestions.

Again, Cytoxan as a long term therapy is not for everyone and may not work if you do try it. I was asked to write this article about my own experience, having exhausted all other treatment options.

Joe Jendusa said...

Thank you for sharing your well-written insights on your experience with Cytoxan.


Joe J

Cherie said...

As always, thank you for your support. It is not a perfect therapy. None of them are for long (a few years at best). It's just another step on my personal journey.