Wednesday, February 29, 2012

Intrathecal Methotrexate (ITMTX) – My Next Great Adventure

spinal-tapIntrathecal: injected into the fluid surrounding the spinal cord and brain.

Methotrexate: a chemotherapy agent administered intrathecally for lymphoma and childhood leukemia, and in pill form for rheumatoid arthritis and several other ailments.

That's right. I'm going to have a chemotherapy drug injected into my spinal fluid every eight weeks or so. What fun! Don't worry. Although ITMTX is not child's play, neither should it trigger hair loss or nausea like many other chemotherapy agents do.

I’ve noticed that many physicians, none of whom actually have the disease, are prone to say things like, "We are making serious progress in the battle on MS," or, "There has never been a better time to have MS." This is misleading in general and utterly false for primary progressive multiple sclerosis, my type. We are not making any progress on PPMS, serious or otherwise, and it is no better to have PPMS today than it was when Jimmy Carter was president.

I keep searching for something, anything, that will cure slow down the progression of this damn disease. Here's what I've tried so far:
Novantrone: a chemotherapy agent administered intravenously four times per year. It didn't work.
Copaxone: an immunomodulator administered as a daily self-injection. Felt like a bee sting. It didn't work.
Oral methotrexate: a once a week pill. It didn't work.
Low dose naltrexone: a daily pill. It didn't work.
Rituxan: a chemotherapy agent administered intravenously four times per year. Seemed to work at first, but clearly didn't after a while.
CCSVI treatment: an interventional radiologist used angioplasty techniques to open restrictions in the veins that drain my central nervous system. I had this procedure twice. It didn't work.
In the past year I've not even attempted to treat my PPMS because I saw no promising options. Then a friend told me about a neurologist in Manhattan, Dr. Sadiq, who conducts MS research and has published the results of his open label trial of over 100 progressive patients being treated with ITMTX. The long and short of it is that about 82% of his PPMS patients either stabilized or improved after beginning this treatment.

imagesDr. Sadiq is a well-regarded MS scientist and clinician. So why am I less than optimistic that this will work?

In the medical field there are countless encouraging, preliminary studies that are later disproved by more rigorous follow-up trials. Since no trial, not even one, has ever been successful for PPMS, this is probably a loser as well. But I'm desperate, as I'm not that far from being completely immobile below the neck. I don't have the luxury of time to sit back and wait for everyone to figure this out to the nth degree. As I did with CCSVI treatment, I need to push my doctors to take action, now.

After reviewing Dr. Sadiq’s research a few months ago, I approached my neurologist to discuss the ITMTX option. He was initially dismissive, having a perception that ITMTX was too risky. I kept pushing, and he finally consulted with some oncologists, who changed his attitude about the safety of this treatment. He set me up with an oncologist associate of his, who routinely administers ITMTX to his cancer patients. Kim and I consulted with him on Monday.  I will be his first MS patient.

I've never had such a thorough examination/consultation. This doctor sat with Kim and me for 90 minutes and discussed the research papers that I had provided, his experience with this treatment for cancer patients, and my medical history. My first injection (via spinal tap) will be next week. It may take me many months to determine if this is helping or not, but I'll keep you posted. (see this 9 month positive report)

It’s a bit like…
I've been at this party for a long, long time. I've danced with a few pretty girls, but none of them have worked out. Why am I still here then? Well, this is the only party in town, and I'm not ready to turn in just yet. I'm still enjoying myself, and I'd like to see where this goes.
(Photo credit: Nuno Duarte)
Lately I've been a bit of a wallflower. There are plenty of women to choose from, but none of them interest me, and the feeling seems to be mutual. I have my eye out for that certain someone. Maybe she's not my soul mate, per se, but that's not what I need. I'm just looking for a girl who can make my days a little brighter.
But wait, who is this? There's a girl I'm just noticing for the first time. She's not particularly pretty or popular, but there's just something about her. What have I got to lose?
I approach her with no particular expectations or illusions, and in my most suave and confident manner I whisper in her ear, "Let's dance."
To be continued…

Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.

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  1. Good luck Mitch. I hope this girls turns out to be exactly what you (and all of us progressives) hope for.

  2. I hope this works for you. I had it 4 times with Sadiq. It's painless with no side effects if your doc follows his protocol.


  3. I so hope you have success with this. I know they use it for Rheumatoid Arthritis, which my sister has, but I didn't know about MS. I, too, am becoming more and more discouraged about treatment options for us progressive types. I wish I were as brave as you, though.

  4. Keeping my fingers crossed, and sending all kinds of good vibes your way!

  5. Plz keep us posted. May be my
    Move. Greek

  6. i'm arming myself with as much info as i can gather, and heading to my neuro! your experiences is a huge inspiration - as is your 'tude!

  7. Have you had any success? Eager to know.

    1. I was on this treatment for two years. During the first year it seemed to stop my progression, but during the second year it didn't. I made a lot more posts about my experience: