Where Does Your Monster Live?

Maybe your monster lives in the closet, like the one my new buddy Trevis writes about.  Maybe he lives at the end of the book, like mine does.  Today’s monster is Mighty Relapse, and you won’t find him hanging out with the other monsters on Sesame Street.  M.R., for short, is too ugly to live with cuties like Elmo and Zoe.  Regardless of where your monster lives, or how ugly he is, take my advice – it’s better to meet the monster head on and deal with him.   Remember, my friends, Knowledge Decreases Fear.

It’s only been nineteen days since my IPIR and allergy attack from Copaxone.   For fifteen days now I’ve been pondering if I’m in a true M.S. relapse.  Yesterday (ironically on my five month anniversary of my M.S. diagnosis) I came to the realization that (duh, yes), I’ve been in a full blown relapse.  My symptoms are much, much worse and very obvious.  And, they’ve been driving me nuts for many days now.  I wanted to blame everything on the Copaxone reaction, when in my heart I knew this was a true relapse.  Why? Because I hoped to get through a full year without a relapse occurring.

I also hoped to make it through a full year without any new lesions coming out to play.  We’re beginning to think I didn’t beat the odds on that spectrum either.  (The hubby isn’t taking me to Vegas anytime soon).  My foot buzzing/vibration symptom is a new one since my last MRI – and possibly could mean a new lesion has appeared.  An MRI is in my near future and we’ll sort it all out then.  

In the meantime, the Copaxone is definitely out.  The reaction was too much like an allergic one (very rare apparently for folks on Copaxone) and it’s not something to mess around with.  So, yesterday, the hubby and I played in the Alphabet Soup with my awesome neurologist and together we reached a conclusion.  We’re going with Rebif (at least for now).  I’m nervous about the flu symptom side effects, the possible liver issues, and the building up of anti-bodies, but we all need to be nervous about something don’t we?

The hubby and I considered Tysabri as well, and if the Rebif isn’t manageable, that’s where we’re headed next.  I was drowning in my soup, so when push came to shove, I told the hubby to make the decision for me. Even though the you-know-what guessed my weight at 22 pounds higher than what it is, he does have a solid decision-making ability.  He decided at this point in the game to err on the side of caution, selecting the more established treatment method, the one with a longer history than just a couple of years.  Plus, who knows how bad those flu symptoms will be for me anyway.  Avoiding a monster doesn’t create knowledge and we all know that it’s really knowledge that decreases fear.  I won’t know until I try it.  If nothing else, I know the Tysabri option may still be available to me as well.

Here’s why I’m torn.  Tysabri really seems to be a strong drug – strong meaning that it’s apparently quickly effective for the treatment of MS, perhaps even stronger than Rebif.  But there is a level of risk with a newer, less tested treatment.  Does it really work? Yes, people died while on it – but they were on Avonex at the same time.  Can a couple of years tell us enough about a drug that is infused into our body once a month?  Risk vs. reward.  We decided on the lower risk option for right now.

In the meantime, while I wait for my new MRI, my next round of blood work that will serve as my baseline for testing liver function and antibodies, and for my shipment of Rebif to arrive, I’m going to be doing some reading.  Have you heard about Campath?  I also have the opportunity to enter into a clinical trial – Rebif vs. Campath – a new infusion medication that is done only once a year! This experimental drug is for treating M.S., organ transplant rejection,  and several types of leukemia. The generic name for Campath is Alemtuzumab.  I wanted to be involved in a clinical trial since my diagnosis.  If I have to have this disease, the least I can do is help others in the process through scientific research.  If I enter this clinical trial, designed to compare Campath to Rebif, I’d end up taking one or the other for a period of time (two years).   Before I commit to such a study, I want to do two things (a) see if I can tolerate Rebif in case I get selected for that treatment group and (b) read up on Campath itself.  With a relapse and possible new lesion(s) within only five months of diagnosis, I want to be sure what I’m doing.  I don’t want my brain and nervous system to suffer at the hands of science either.

So, there, I’ve said it – I’m in a relapse!  And, oops, I did it again – I may have a new lesion or two!  C’mon out little monster, from the closet, under the bed, or from the back of the book. I’m not afraid of you anymore!