Sunday, February 21, 2010

The Perverse Benefit of a Diagnosis

"What’s Illness Got To Do With It?"

Most everything these days. I live with multiple chronic illnesses - multiple sclerosis, rheumatoid arthritis, and dysthymia. I write on topics related to health, including living with chronic illness. I unofficially counsel other patients who live with chronic illness. Besides my life as a musician, music teacher, daughter, girlfriend, and kitty mommy, I am practically a professional patient.


In a perverse way, it is fortuitous that I live with multiple chronic illnesses. Let me explain.

I began using Rituxan as a treatment for rheumatoid arthritis last November/December. Rituxan has been studied as a treatment for multiple sclerosis. The results of the clinical trials were promising and successful, but Rituxan will not be studied further for MS, thus it will never be an FDA-approved treatment for MS. Instead its monoclonal antibody siblings - ocrelizumab and ofatumumab - are being studied in MS.

Last fall when I first approached my rheumatologist about trying this medication, I knew full well that it could possibly help my MS. When my rheumatologist called my neurologist to get his opinion on the matter, my neuro was thrilled. "That's great!!" As soon as my rheumy got off the phone with him, she called me and said it was a go.

This Friday I saw my neuro for the first time since the infusions. I wasn't sure if he wanted me to go back on Copaxone so I needed to ask. (He had wanted me off Copaxone before the Rituxan infusions.) The answer - no more Copaxone.

He referred to what we know about the risk of PLM when Tysabri (a monoclonal antibody) is combined with other MS immunomodulators. Rituxan carries a much smaller risk of PML (progressive multifocal leukoencephalopathy) but he would prefer not to test the risk with combination treatment....and I'm also on methotrexate anyways.

"You're on some powerful drugs. Your MS is covered."

My neuro outright said that he'd love to prescribe Rituxan for MS but that insurance companies would never approve it. We joked that I might be his guinea pig. LOL.

I can say with confidence that my RA is better since the infusions. So far I can't really speak to the effect on my MS, however I am requiring less neurontin for MS-related pain lately.

One thing which is concerning though is that during the exam we discovered that I am REALLY much more numb than I have ever been on my right leg and torso. Big surprise to me. I could hardly feel the pin pricks AT ALL.

Combining the numbness (all four limbs plus torso) with my lousy balance and dragging leg, my neuro nurse suggested that we just caught me in a down swing (but not one worth calling a relapse). At this point, I've almost forgotten what my original "baseline" ever was. Hopefully Rituxan will keep me from having to readjust my baseline at a higher degree of dysfunction each year.

"What's Illness Got To Do With It?"

The irony is that without an RA diagnosis, I would never have access to Rituxan. And since Rituxan is delivered by infusion it is covered under major medical and not under my pharmacy benefits (which are capped at $1500 yearly in my insurance plan). I'm much better off financially using this treatment which is an extra blessing.

The perverse reality is that I am now glad to have RA. Without it, my treatment choices would be limited. So illness has everything to do with it. :)


  1. Hmmm, very interesting perspectives!

  2. Definitely one way to look at it. Anytime a negative can be a positive it works for me!

  3. How odd is illness. How strange the drugs we are offered. No one knowing for sure what helps what. (or harms what) Illness was never a part of my life or my families life before MS. Before AIDS, I didn't even KNOW sick people. (Oh, right, my partner was always sick with some unknown thing back then--which of course translated to all that it was "in her head." Funny, not one, NOT ONE--"I'm sorry" did she ever get from doctors or family. I NEVER doubted that her symptoms were "real." But I digress.) Now with MS I know disability. A whole new sub-group of society. I find more in common with them than with those who have illness. Hmmm. My MS was at its best when I had cancer, no chemo. Riddle me THAT! My body likes stress. I know this. Drs. can't accept this as it goes against everything they have been taught, and experience in their own lives. When I am dealing with what others call stress, I am feelin fantastic. My body operates in turbo speed. My brain is sharp, my limbs move strong. And I am happy. It is some chemical make-up of MY body, and this will influence how any drug works on MY body. So who is looking out for my needs? NO ONE. Can't happen, too rare, I get it, I accept it. Matching he right drugs with our chemical make ups is tough. Trial and error. Isn't life funny? HEY! Another MSer is moving into "my" home, cool, huh? AND she happens to have my same neuro---what are the chances?

  4. Hey, it's only fair that you get some benefit from having RA *and* MS. I'm glad that it worked out for you to receive a drug that really helps you, and less out-of-pocket expense for it!

  5. Glad to hear your update Lisa. It is important for good historians like yourself to document and help show the way.Best wishes.

  6. Isn't this so true!! The diagnosis has EVERYTHING to do with it. Otherwise you are doomed to suffer. I hope to make more headway in those ways in the near future.

    Come visit me sometime at It's Time To Get Over How Fragile You Are!