When We Don't Agree...Entirely...

Stuart, over at Stu's Views And MS News, has kindly asked me TWICE if I would post-a-post he has written about his personal experience when stopping his DMD (Disease Modifying Drug) he takes for MS. Here's a link to his post: My Hiatus From My MS Medication--Pros and Cons .

I have thought long and hard (which is quite a feat for me to accomplish these days) WHY I did not immediately respond to his request to post-a-post when he first emailed me to ask this. I DID, after all, click the link in his email to READ his post. And then he emailed me again today with the request...and still I dragged my feet.

I have reread Stu's post several times now trying to decipher what it is that "troubles" me. It is certainly NOT Stuart or his experience...but something kept nagging at me in the back of my noggin, saying, "You don't necessarily agree"...and I couldn't quite put my finger on exactly WHAT I "didn't necessarily agree" upon. Stuart writes a very telling tale of his OWN experience...what was I getting hung up about???

Sooooo...at the risk of pi$$ing off the entire MS Community (and I DO hope you do not take offense in my using of YOUR well-written post, Stuart, as my spring board for THIS post) and receiving MS Hate Email from the "Society", the big PHARMA companies, and anyone with major STOCK investments in the DMD's...I will attempt to address my "you don't necessarily agree" ideas. But first, I must tell you the FABLE of my experience with the DMD's (although I may have difficulty working in a rabbit, a tortoise, and a cow!). I WILL try to keep it short and succinct, adding "blahty blah" when necessary:

I was diagnosed with Multiple Sclerosis on TAX DAY, April 15th, 2003 (Yes...your math is correct. My MS anniversary is just around the bend, so please send all cards and flowers NOW if you expect them to arrive on time! LOL). I was diagnosed after what had become a typical bout of pain in my upper, left arm/neck/torso...something I had been experiencing at LEAST five years off and on prior to diagnosis.

I got an opinion, then a second opinion, and a third opinion (it takes me a few tries before I'll believe ANYTHING!)...the third opinion, from a leading MS neurologist in the field. She followed the guidelines of the MS Society, the ECTRIMS, and the AAN...all the "neuro bigwig" organizations...who were (and still do) recommend starting one of the disease modifying MS drugs immediately. And I was scared $h!+less, so of COURSE, I complied with her treatment guidelines. I began Copaxone June 3, 2003. (**Writer's note: You may be wondering how in the heck I KNOW the exact date I started Copaxone? Copious note taking, my deary! An MS Symptoms Journal I have kept from diagnosis forward**)

So...blahty blahty blah...months passed. I, OF COURSE, experienced the Copaxone-I-Think-I'm-Having-A-HEART-ATTACK reaction...three months into using the medication...certainly NOT typical timing, but I'm "not typical" (I'm not even "normal" as you have already figured out). And then there was the bruising and hard lumps under my flesh...and STILL, I shoved that needle in me religiously. I developed a runny nose and seemed to catch a cold every two weeks or so. My NATIONALLY KNOWN NEUROLOGIST at the time told me these symptoms were "just the cold season" and had nothing to do with Copaxone...I believed her...sort of. Oh, and I also had a relapse while on the Copaxone.

Finally in February, 2004, I convinced my NATIONALLY KNOWN NEUROLOGIST to just "check" inside my noggin...I didn't feel right...and frankly, couldn't take feeling SICK every two weeks or so (which I NOW believe really was caused by the Copaxone because I have never experienced that "cold season" again). As I suspected, my 3rd MRI of my lifetime showed new lesion development...this was certainly NOT a good thing...to Martha Stewart OR my NATIONALLY KNOWN NEUROLOGIST (why do I keep highlighting that? Because I was allegedly SEEING one of the best neuro's in the field of MS...which I later found out are about a dime a dozen. LOL).

I chose Copaxone as my initial "drug of choice" because of the alleged less likelihood of serious side effects. At the time (and, as I type this), the original 4 injectable DMD's all carried with them the probability of slowing my MS progression somewhere around 33%...if you read the fine print of the studies conducted. 33% seemed better than 0%, so I opted IN. Now that it was deemed Copaxone was not making that "33% guesstimate" marker, my NKN (see above...too tired to type out that all caps title for my neuro at the time) decided it was time for bigger guns...INTERFERONS. Which ONE did I want to try?

Well gee...I'm no dummy! The thought of having to give myself an injection 3x's a week versus ONCE a week was an easy choice. And besides, I'm a nurse...if I could stick a needle deep into the muscle of an unsuspecting patient, I could surely do the same to my OWN thigh?!? I started Avonex May 27, 2004...the once-a-week-intermuscular-injection versus the three-times-a-week-subcutaneous-injection INTERFERON. I proceeded to have a major relapse JUNE, 2004.

I'm not going to pull any punches here...AVONEX WAS A BEAUCH FOR ME TO TAKE! There...I said it. I absolutely HATED this drug and yet, to date, it has been the ONLY drug that has shown a decrease in enhancing lesions in my pea brain over time (Tysabri excluded...I wasn't on it long enough to measure). I tried the Ibuprofen, Tylenol, icing the site...nearly ALL of the suggested remedies for the injection pain and subsequent "flu-like" symptoms following Interferon dosing. I was titrated UP to a full dose of Avonex...and I was titrated DOWN to a 1/2 dose, then a 3/4 dose of the drug until September 2005.

At first, the flu-like side effects lasted only 24 hours...and as the year progressed, this time expanded to 48 hours, then 72 hours. I was experiencing "shot flu" almost as many days as I was experiencing "normal living". I did the math again...at even TWO days a week times 52 weeks a year, I was spending a minimum of ONE HUNDRED AND FOUR DAYS FEELING LIKE HAMMERED $h!+ a year...this was once again "not a good thing" in my eyes. The "cure" (**Editor's note: To date, there IS no cure for MS...I use the term loosely and with tongue in cheek**) was worse than the disease itself. And even though my MRI gave an "all clear" reading while on the Avonex, I STILL had a major relapse and wound up in a hospital for 3 days while on the drug. Finally by the summer of 2005, I began running 100-103 degree fevers 12 hours following my injection...I could no longer function for up to 3 days out of my week, so I STOPPED THE AVONEX and THEN called my NKN.

It was decided by my NKN that "perhaps" Interferon (although picture-perfect on MRI) was not a drug of choice for me after all...I had developed the "sickness" you will only hear whispered about in the corners of MS chat rooms. To my knowledge to date, there is no official title given to this phenomenon of symptomology...I didn't develop antibodies to the Interferon...my body simply rejected it all on its own. Thermometers in doctor's offices (nor mine at home) don't lie...103 fevers are a bit much to suffer through for 1-3 days! Not to mention the pseudo-exacerbation of symptoms that coincide with high fevers...and the muscle aches/pains of "flu-like" symptoms. I suppose it was the near delirium while staying at a friend's house on one of the islands that finally convinced me I could no longer keep taking this medication...no matter WHAT my NKN said to me.

"What now, brown cow?" you may be asking (or you've already stopped reading...to which I salute your swift decision making process!). Interferon = Betaseron and Rebif...the last of the injectables available. In waltzes RITUXAN STUDY!!!! Yep, I opted to be a guinea pig. In November, 2005, I received two IV doses of "SOMETHING" (and you know, to this DAY, those bastids have NEVER contacted me to inform me exactly "what" I got in those unmarked IV bags!). I developed a metalic taste in my mouth, got moderate to severe gastritis, and began experiencing severe hypertension. Rituxan? Who knows...(except the big PHARMA company that conducted the study, that's who!).

I was followed for months with blood draws, MRI's and EDSS tests to determine (if I really DID get the drug) what effect it was having on my now labeled "aggressive" MS. I stayed in the RITUXAN study with my NKN, but I changed NKN to a NEW NKN in February 2006...for several reasons, but mainly my impatience with the clinic/hospital system my first NKN worked in...thus beginning my precarious hop down the path of MS with Dr. She Who Will Not Be Named.

In March and April of 2006, I had yet another severe relapse. Dr. SWWNBN had an "in" with my prior NKN, so they "talked amongst themselves"...on my April 2006 MRI for the Rituxan Study, I was advised behind closed door and without the PHARMA company's knowledge, that I needed to exit the Rituxan Study and get on another disease modifying drug as soon as possible...my MRI showed more development of new lesions and I was losing some of my functioning...I now had a diagnosis of "aggressive MS"...whatever the heck THAT meant! Dr. SWWNBN heeded NKN warning and scanned me AGAIN! My choices were now Novantrone, monthly Solumedrol, Rebif, or Tysabri...the latter STILL being OFF MARKET due to some "issues" under investigation by the FDA.

Novantrone? Nope...that's chemo and has a lifetime limit. Saving that one for later. Monthly IV Soly? Nope...that stuff was working less and less when I took it for RELAPSE! I didn't have high hopes it would do much on a monthly basis for my out of control brain. Rebif? I had to explain to Dr. SWWNBN once again the severe symptoms I had developed while on the "other" Interferon...I'd much rather have had a daily COLONIC than go through THAT again! Tysabri? It was being whispered the FDA "might" bring it back to market as early as August 2006. I decided to wait and throw my hat in the ring for the Tysabri...this was ONLY a few months away after all.

In the meantime, I experienced yet ANOTHER relapse of significance in the summer...wound up in an ER, etc. I also tried accupuncture, a gluten-free diet, and a few other "natural" remedies during the prior two years...my life had boiled down to an "aggressive case of MS" with increasing neurological dysfunction...and, I was still working full-time (and remain gainfully employed to this day).

In August, 2006, I received my first of four doses of TYSABRI. I felt really good while on the Tysabri...my neurological functioning seemed to be returning and I stabilized dramatically. My EDSS scale numbers decreased and I was sure I had finally found the "DRUG FOR ME". Until my fourth dose, that is. In November 2006, while being infused with my liquid gold, I became stuporous, developed a rash-like redness around my neck, and my ankles developed red spots suspiciously looking like hives. I was immediately given a bolus (big dose) of IV Benadryl, Solumedrol, and some epinephrine, while Dr. SWWNBN and my infusion nurse stood around ringing their hands. I DID recover, but Dr SWWNBN did not want to take any chances and risk a full anaphylactic response (throat closing and dying from being unable to breathe...I suppose I should THANK her for THIS decision?!?), so she yanked me off the Tysabri, gave me a "wash out" period of three months, and INSISTED I go on Novantrone.

I started Novantrone in February, 2007 (However, not before landing in the hospital AGAIN with another severe relapse and receiving five doses of IVIg...which...did nothing to affect my course of MS). 2007 was initially a very good year for my MS while on the Novantrone. It seemed to halt my relapses and my MRI's were once again "clear"...until September, 2007. I was hit with ANOTHER relapse, followed by relapse, followed by relapse. It seemed the Novantrone could no longer "hold" me the full 3 months inbetween doses. I had my last dose of Novantrone December 28, 2007...and began my most recent relapse in February, 2008...6 weeks prior to my next dosing of Novantrone. IT WASN'T WORKING ANYMORE.

I met with Dr. SWWNBN on February 14th of this year (one day following my car accident and 4 days preceeding development of my "adenovirus" that I thought might surely kill me! LOL) and discussed with her my idea I really WASN'T getting much benefit any more from the Novantrone and, "What about trying Tysabri again?" She couldn't deny my symptoms or my neuro exam and agreed. This was followed by another MRI (now about 20 total since 2003), which solidified my belief...my MS was once again "active" and "aggressive"...my head lit up like an airport runway on a dark night.

Soooo...I'm now scheduled to restart Tysabri in 3 days. I want to believe THIS time all will go well and THIS time I will have finally found something to slow down the smoldering flames in my head (and not KILL me in the process!). But as you can see from reading the above, I have reason to be skeptical. NOTHING has proven effective for my BRAND OF MS to date.

I DO believe in the value of Western Medicine...don't get me wrong. But I cannot, in good faith, postulate for YOU whether or not the DMD's will be of any value whatsoever OR whether or not, should you take a medicine hiatus, this will make you susceptible to a relapse any more than growing hair on your palms. I can ONLY share with you my arduous experience with these drugs and "hope" there might be something of value for you in MY experience.

THIS is the notion I struggle with when reading other MSers experiences that seem to draw conclusions for the masses...and I am NOT saying that is what Stu's post does/did either! I AM saying I will and do have great difficulty supporting anyone who believes they have found the "fountain of youth" (so to speak) when it comes to MS treatment(s).

We, MSers, are all uniquely different, yet we share a similar diagnosis. But even within that blanket diagnosis, lies a vast pool of unknowns for how each of us will respond (or not) to the current available treatments. What may work for ME, may or may not work for YOU...and I can only share with you MY experience. Some MSers LOVE Avonex and are doing well on it...I simply am/was NOT one of them. That doesn't mean the drug is wrong/bad/ineffective...it only means it was wrong/bad/ineffective for ME and my UNIQUE BRAND OF MS.

Your "brand" is also unique...and I encourage you to explore all of your options in finding something that works for YOU. And, after researching your options, you may even choose to DO NOTHING...I respect this decision as well. You, my friend, are your best NATIONALLY KNOWN NEUROLOGIST when it comes to your own central nervous system...listen to yourself...and choose wisely.

And THIS ends the fable of "BrainCheese in Blunderland"...