Thursday, May 14, 2009

The lesions are active! The lesions are active!

The title of this post is meant to be read with the same enthusiasm as "The British are coming! The British are coming!" but, obviously, I don't have the ability to reach through the computer screen and force you to do that....or do I....? (mmmmwwwaaaaahhhhhahahahahaaaa!)

I had a big day at the Partners MS Center yesterday morning. First, an appointment with my neurologist, Dr. Lopez-Diego. Unlike all too many doctors, she is always on time, always dit, and always shakes my hand hello and goodbye. I like these qualities in a physician. She acts like she is an expert that I've hired to take care of something outside my skill set...which she kind of is. We are partners in treating my MS. Also, she's a woman and probably a little younger than I am. Dr. L-P definitely perpetuates the stereotypes that female doctors are more empathetic and humble and younger doctor's are more progressive and open minded.

Although I was anxious to see the MRI results, I first had the overall neurological clinical workup. I did the walking down the hall on my heels and my toes thing, the flipping my hand over and back, and all the other tests of my reflexes, strength and vision. These vision tests frustrate the hell out of me since I can't read any of the letters on the card with my nerve-damaged right eye, but I still have to cover my left eye and try anyway. Next time, I think I'm going to memorize the card and pretend I can read it or maybe I will read something that isn't there. I could say: "Why it's a miracle! I can read it! It says I A M B L I N D I N T H A T E Y E!"

After the neurological games, we sat down to look at the MRI results on Dr. L-P's computer screen. Although the neurologist and radiologist are not in complete agreement about the particulars, there are definitely more lesions on my spine and in my brain and the contrast shows activity (whatever that means) in at least one of the lesions.

The radiology team and the neurology team are going to have a pow-wow this week to compare the old MRIs and the new MRIs side by side so they can agree on a final report. I guess there's no such thing as a dissenting opinion when it comes to MRIs.

So, what do these results really mean? Dr. L-D believes that the thrice weekly Rebif injections and monthly solumedtrol infusions are not working as well as she had hoped. I get the impression this is supposed to be bad news but I'm not feeling bad about it. Perhaps it's denial. Perhaps it's just my fabulous, optimistic attitude. Either way, I'm focusing on the positive:
  1. Once Dr. L-P changes my treatment, I will no longer have to give myself an injection of Rebif 3 times a week. Can I get a Whoot-Whoot?!
  2. I will no longer have to go into the MS Center once a month for infusions of solumedtrol.
  3. I will not have to get blood tests every couple of months to make sure the Rebif isn't damaging my liver
So, what's next? As soon as the MRI results are finalized, I'm going to stop taking the Rebif and start one of two possible low-dose chemo drugs: Rituxan or Cytoxan. I asked Dr. L-P about Tysabri but she doesn't feel comfortable with the 8 US cases of PML--a very rare, but deadly brain infection. I am leaning toward the Rituxan since you only have to get 1-2 infusions a year and hair loss isn't one of the possible side effects. I may have MS but I am still vain enough to want my hair.

The funny part about all of this is that I feel great. My vision sucks but I don't have fatigue, leg pain, headaches, or any numbness. Physically, I have absolutely no complaints. Seriously, until I open my eyes and have trouble seeing things in the morning, I can easily forget I have MS. Although this could just be the calm before the storm, I'm going to enjoy it while it lasts.


  1. Julie--keep me posted on your progress---my neuro is all about the chemo, as well. But there weren't 8 US cases of PML.
    Only 1, since the reintroduction. Everything else is out of the US.
    Biogen has to post data every month.
    Here's the link, just so you can keep an eye on it, in case you need to think about Tysabri.

  2. Sorry about the active lesions. I'm really curious to see how your chosen treatment works out for you. I've thought about Rituxan since it is used for RA (which I also have). But even with 90% insurance coverage, the cost would be too much.

  3. You have taken a route of treatment that is totally foreign to me...To be totally 100% honest it scares me a bit.

    In my opinion, (which could/should mean nothing to you honestly), I would consider tysabri, or maybe even doing a clinical trial if your treatment isn't currently working. I wouldn't let the PML worry you, most of the people who died from that also had another condition to compromise their health.

    Also I'm curious about your monthly IVSM use. What is the reasoning behind this? I've never heard of anyone else doing that. This also makes me a little nervous because steroids are a really intense drug for your system. Your body had a lifetime tolerance for those. Be careful.

    You know your doctor, you know your body. And I'm not saying "unorthodox" treatment is bad, I'm just saying be sure its what YOU want to do, not just want the neuro wants.

    (ew I sound like an old lady mom I like your blog..thanks for the rec.)

  4. I feel very fortunate to live in Boston. If you have to have MS (which apparently I do), I feel like there isn't a better place to be treated. The Partners MS Center where I go for treatment is part of both Brigham and Women's Hospital and Mass General Hospital--two of the world's leading research hospitals.

    In the year and a half or so since I was diagnoses, I have heard of many other people who have taken low-dose chemo drugs for MS. The National MS society discusses it on its site and here are a few others, too. I picked just articles addressing Rituxan but you can find studies about Cytoxan, as well:

    As you can see, these articles go back a couple of years so this is nothing new.

    I am not the kind of patient who blindly follows my doctor's advice. Dr. L-P is my second neurologist because I did not jive with the style/recommendations of my first neurologist. I am resourceful and take charge of my own health. I have not made a final decision yet but I will PROBABLY go with the Rituxan and then, if it doesn't show improvement on the MRI in 6 months, I will go a different route.

    I am not advising anyone else about the best treatment for them. I would never presume to tell anyone else what's best for them AND MS is so different in each one of us. I am just sharing my experience and perspective.

    Lazy J

  5. Oh and the monthly steroid treatments are called "pulse" steroids are are also a well-established treatment. I was fortunate to tolerate them very well but, unfortunately, they didn't work--as far as the MRI results were concerned. I think they were helpful for fending off symptoms and a full-blown relapse.
    Lazy J

  6. Hi there! Guilty lurker here.

    I just want to say that years ago when I was first diagnosed, I took cladribine tablets which was a form of chemo. Although it made me deathly sick, hair loss, and all that good stuff, it did help me. I chose to go off of it because I started fertility drugs to get pregnant and the two didn't jive.

    Cladribine was backed up with monthly infusions of Solu-Medrol with a daily prednisone tablet dose. When I stopped the chemo, I went on a prednisone taper, to get down to 10 mg prednisone daily. From 1980 until 1998, I have had Solu-Medrol at various intervals along with prednisone because it was sort of a "hot shot" and enabled me to keep up with my toddlers as they grew into little league, etc.

    I still use Solu-Medrol infusions (still on prednisone) when the prednisone needs a boost and to get rid of pesky symptoms that I can't otherwise deal with.

    I tell you this so your readers can see that Solu-Medrol works for some and not for all depends on the person, their symptoms and their MS.

    Thanks for posting your experience and upcoming choices. Please keep us in the loop.


  7. Well, I'm glad to read that your attitude remains (+), but sorry to hear that you have "active lesions"...
    Sounds like you are continuing to be proactive - after all, you are your own best advocate for your health. Hang in there.

  8. I am getting ready to enter a clinical trial of Campath at the Univ. of Michigan hospital. It is also a chemo drug but NOT FDA approved as an MS treatment. I'm scared to death but I developed an allergic reaction to Copaxone and the Refif was making me so ridiculously depressed. I've been off Rebif for two months now and about 1 month after stopping the injections, my emotionally well being did an about face. My husband said he never realized until then just how much the Rebif was a cause of my depression and anxiety. I'm still terrified of the chemo drug, tho. Cases of PML there. I love your blog. Please keep it up.