Thursday, April 2, 2009

MS and Me: What a Treat(ment), Part Four

Okay, here's the last installment of my treatment chronicles. Sorry for the length of all of these posts, for a shorter read you might want to try "War and Peace" ...

CellCept: CellCept is an oral drug that suppresses the immune system that was originally developed to combat organ transplant rejection. Do you see a pattern here, in all of the treatments I've mentioned? All current MS treatments seek to either modulate or suppress the immune system. They've all also completely failed me, the little bastards. I'm pretty sure my immune system isn't the mad sculptor that is continually chiseling away at my nerve cells.

Anyway, CellCept... I did this drug for about three months in the spring of 2008. It had absolutely no impact on my MS (shocker!), and I didn't feel much in the way of side effects, except for some extra fatigue. As any MS patient will tell you, fatigue is not something we're lacking, so there's really no need for "extras", thank you.

CellCept has been implicated in opening patients up to PML, the same brain infection that haunts Tysabri patients. It stands to reason that any drug that suppresses the immune system to a significant degree will potentially leave the patient open to opportunistic infections that are normally kept under wraps by a fully functioning immune response. I have a fear that doctors and researchers are really opening up a Pandora's box in tinkering so profoundly with the immune system, which after all has evolved over millions of years to reach its current state of sophistication. Knocking out the vast portions of it seems to be a bit of a gamble, but any port in a storm, I suppose...

Rituxan: Rituxan is a drug in the same family of drugs as Tysabri, called monoclonal antibodies. These drugs target very specific cells within the immune system, in the case of Tysabri, T cells, and in the case of Rituxan, B cells. Without going all biology professor on you, T cells attack potentially harmful invaders themselves, and B cells produce antibodies that do the attacking. Rituxan was developed to treat B cell lymphoma, a role in which it's been very successful at for the last 10 years.

Based on some evidence that Rituxan might help a subset of PPMS patients, Dr. Big Brain and I repeatedly petitioned my insurance company to approve my taking the drug, which required quite a bit of work, because a single round of Rituxan infusions costs about $20,000.

I did the infusions (two intravenous infusions, given two weeks apart) in September 2008, and since then I've been hobbling around with no B cells. So far, I've successfully avoided getting any horrible deadly brain infections, but I also seem to have avoided getting any benefit for my MS as well.

I had really high hopes for Rituxan, but it appears to have failed me completely. For the drug companies, it's anything but a failure, at 20,000 bucks a pop.

So, there you have it, my total treatment history over the last six years. The only thing that ever helped was a massive dose of steroids, which unfortunately left me with dead bones in both shoulders and both hips. Not a terrific trade-off...

So, modern medicine has proved a dismal failure in treating my MS. PPMS is notoriously hard to treat, and if you're an RRMS patient reading this, please don't be discouraged. Almost all of the drugs I've listed here have shown efficacy in beating back RRMS, and there are more drugs just over the horizon that promise even better effectiveness in treating Relapsing Remitting Multiple Sclerosis.

As for PPMS, I'm very hopeful that stem cell therapy will at least allow doctors to repair some of the damage done by the disease, even if stem cells won't cure the disease itself. Personally, I'd be very happy with some nervous system repair. Ecstatic, even.

There are currently stem cell trials going on in various countries around the world, using both adult and embryonic stem cells, and there are perhaps half a dozen clinics offering stem cell treatments to patients that can pony up the big bucks and get their asses to Costa Rica, Israel, or wherever other exotic location the patient’s chosen clinic happens to be. There are no guarantees that any of the treatments these clinics offer will actually help anybody, and some of them appear to be outright scams, but a few are doing scientifically valid work, with varying degrees of success. Within the next few months, I may be "leavin’ on a jet plane", if you catch my drift...


  1. It just seems so wrong that the things that kill people with advanced MS are opportunistic infections like pneumonia or UTIs, yet the treatments being offered suppress the immune system.

    BR received Rituxan last August. Insurance wouldn't pay for it, so Genentech provided it through their foundation. UCSF MS Center was a big help making that happen. Alas, there was no benefit to his PPMS symptoms. He did get the bonus of taking a six month suite of Epivir. Seems he was exposed to HepB at some time in his past, and Rituxan has the chance of reactivating the virus.

    He goes in for a spinal cord stimulation trial tomorrow to try and control the excruciating pain he feels from the waist down. Boy, I hope it works.

    Thanks for posting your experiences. If SCS doesn't help, the neuro want's to try steroid infusions. I'll have to bring up the dead bone thing.

  2. Marc, you are the ONLY person I have ever heard of (in 27 years with this) who was given TEN doses of IV SoluMedrol. I understand wanting to stop the beast in its' tracks, but golly gee whiz. I'm so sorry you have to live with that additional ongoing pain. [PS - now I know why my doc is reluctant to give me more than four!]

    Someone in Seattle, about ten years back, had a rapidly progresing case of PPMS and was given a stem cell transplant at the Fred Hutchinson Cancer Research Center. Unfortunately, I don't remember her name, and what her long term results have been. Short term - she did well.

  3. FYI the Repair Stem Cell Institute
    is a non-partial patient advocate education center dedicated to educating the world about available, safe and effective adult stem cell treatments.

    They list reputable treatment centers which have met their rigorous guidelines and standards.

    Filling out a treatment request will provide you with 4 treatment centers who treat MS and meet their standards.

    A patient advocate will then contact you to ascertain which treatment center is the best one for you. This service is free.

    Feel free to contact me if I can be of any assistance.

  4. Marc-

    I have felt infinitely better since giving up coffee and booze: I know, I know, it stinks, but it helps. I've also gave up gluten and every other food I'm allergic to (nearly all of them) for a month and felt great physically, but was a mental wreck as I love food. My two cents.

  5. Good luck to all PPMS'ers.If anybody finds anything that slows it down or cures it please tell the WORLD ! all the best Chris.

  6. Update:

  7. hi w. k. ihope you are feeling good , i too have ppms dignosed in 2005 , been doing the best bet diet for the last 2 years and i will say it is finally starting to work , i am up to 80 steps around ur lace with a crutch and sleeping more soundly but best of all the leg spasms are finally stopping ,i use to dread that feeling when they start , electric shocks at the top of my head down to the tips of my toes ,then the spasms for hours ,all night sometimes , taking gabapenetin by the handfull and baclofan , sometimes i just wanted to die ,those were the worst nights , but i stuck to the diet and am slowly winning , fatigue is now only at night right around bed time so thats ok.
    take care

  8. This is too much, with those expensive medicines, it's too frustrating how one hopes for life through them but fail them at the end. I have heard so many things about this stem cell, will there be a chance to see how it will also work with MS?