Saturday, April 05, 2008

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??? 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 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 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 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 matter WHAT my NKN said to me.

"What now, brown cow?" you may be asking (or you've already stopped 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 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 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 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 MS was once again "active" and "aggressive" 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/ 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"...


TickledPink said...

Okay, so .... my blog must really be irritating to you, eh? LOL

I often wonder if maybe my hiatus from having relapses is merely coincidental and the Fingolimod is doing squat. Who knows? I'm not getting off of it in order to find out.

If I were having a relapse and decided to put a stuffed bear on my head and balance a stack of wineglasses on the back of my hand while playing a kazoo and riding a unicycle when my relapse suddenly quit, you can bet I'll keep blowin' "Dixie" through that kazoo and you won't be able to get me off the unicycle unless you catch me first.

I'm just saying, whatever works, or makes you strongly believe it works, stick with it.

Great post, BTW, and beautiful yellow rat snake (I think).

Shauna said...

Sadly everyone's MS is their own. While we can relate with each other about various things, everyone is different. Everyone has a slightly different chemical make-up.

And YOUR blog is your blog. You can post what you want and not post what you don't want. It certainly doesn't annoy me to read of others' experiences that are not in line with my own. It's more information for us. As you said, 33% is better than 0, so you tried.

A recent post I did had me debating the merits of pi$$ing off a bunch of readers too. But I decided to post anyway, as it's MY blog and MY opinions. And just as some people's chemical make-up is different, so to are opinions. Even though mine is the right one....


Tricia said...

My husband did not do well on Avonex, had the same allergic heart attacky reaction to Copaxone, but did do well on Betaserone for about 3 years, then started having relapse after relapse again. Unfortunately when all this happened he was seeing a general neuro and not an MS specialist and the doctor was hesitant to react. He talked about Novantrone, he talked about Tysabri but he did NOTHING! Finally we switched him back to the specialist who is a 45 mile drive away and he immediately switched him to Tysabri - took us months to get it all approved and still fighting the insurance on it but he's had 3 doses now. I hope he does well on it - too early to tell.

Right now his biggest issue is fatigue - he just can't seem to get enough rest no matter what he does. He see's his neuro on the 16th so hopefully he will have some suggestions for that.

It's all so disheartening. :(

Stuart said...

I appreciate the post to your site and only hope that "others", weriously weigh their options (not in ounces or pounds, but with serious thought) before they opt to sudenly stop what might really be working for them. And if their meds are not working and they don't have a Neurologist will to work with them, then as you did, off to find a new doctor, who will work with them...
All My Best,


Linda, from the very first words I was cheering you on in this post- bravo and thank you so much for writing it!!

I am conflicted over how much Stu asks others to spread his stuff. He has made SO MANY requests, and even follow-ups with things like "I thought you would put it here...", that I find it a bit much. I don't know how many people he emailed with this past request, but until today I think I was the only one who acted on it. And the only reason I did that was because I found a way to use MY personal experience and recent blog reading to discuss the issue. I applaud your ability to use personal experience to address the same issue. It's vitally important to have different views and experiences being shared.

I have an MRI scheduled for a week from tomorrow as a follow-up to my relapse. (Note: my doc wanted me to wait around 5 weeks after the steroids before getting the MRI - something to do with the steroids interfering with the MRI results.) My inner voice tells me that we will see new activity. If that's the case then I'm mentally preparing myself for the doc to suggest switching meds which would mean one of the interferons. I really did not like the side-effect profile of the interferons and that's why I avoided them to begin with - flu, aches/pains, depression (which I already have battles with), liver stuffs, etc. But maybe my inner voice is wrong this time.

And then there's the whole issue of navigating a new assistance program since my lovely individual insurance policy stops paying for meds after $1500 each year. The fear of frustration with that is enough to make me cry just thinking about it. There's so much more to the choices we each make when it comes to meds, no meds, diets, whatever, that honestly none of us should be preaching to others what they should be doing to fight this "MonSter."

All any of us really can contribute is - "this is what I do/have done, why, and here's the result." Again, THANK YOU SO MUCH FOR WRITING THIS VERY IMPORTANT POST.

And I'm still praying that the Tysabri may be "the one" to kick the MS in the butt.

This comment has been removed by the author.
Jim said...

Wow... this is a venting day for you. I do agree that we all need to explore everything that is available out there. :)


Anne said...

Hi Linda: I too am hoping that this round with Tysabri will work for you. A great post that says all the stuff we all want to say and don't.

Good job.

harkoo said...

I have been reading your words for several years now and I have always thought you showed good judgment of when it was time to try another med. I have a different type of MS but I can say while I was taking betaseron, I had to finally use a w/c. When I was on copaxone, I had an awful attack that numbed my feet permanently. I have stopped Avonex this summer--I refused to take it anymore as the nausea was so intense. I don't think the drugs have helped me at all and I am not going to take them at this point. Linda, I will keep my hopes up for you while you try the tysabri a second time--let us hope this is the drug that gets things under control for you.

Diane J Standiford said...

Loved your post too, that said, How is it that so many NKNs give so much different advice? Say and do such odd things when presented with same data? Besides taking this from all the MS blogs I read, news repots, my own experience with THREE differemy NKNs from NKN Seattle, WHY so much variance?? I've posted this often and nobody wants to read it, but: THEY DON'T KNOW. You will get a best guesstimate on MS from any NKN and THAT could change in a heart beat.
18yrs DX, 41 years with MS (by symptoms after brain trauma/MRI damged area) this is my opinion based on my experience and mixed in with that of others and all the news that's fit to print, including medical journals and investidatibe reports. That snake is gross and needs its head cut off, sorry snake, I'm in a foul mood today. May the MS Gods save us all from a miserable future; and may they bless the drug of our choice.

pb said...

It constantly amazes me how not one MSer shares many symptoms/experiences with another.

Geez, kid, best of luck with your next endeavor. Keep us posted.

mdmhvonpa said...

Like Stu ... I've gone on vacation but I don't suggest it for everyone. It's a family curse and the newest victims are currently on some sort of treatment, but we all develop VIOLENT reactions to the drugs. I cut the experience short ... I pray that something more effective is found in the next 20 years. That will probably be the time frame when my son is diagnosed.

Blinders Off said...

It is our individual decision, I think about stopping everyday. Avonex was not kind to me; methotrexate did work, but decided to go toxic. Finally, Copaxone has given me my third IPIR.

It gets frustrating, but it is what we individually choose to do. MS is not going to kill us, the drugs we take to have some sort of normal life will be the culprit. I respect those who do not take anything to prevent the progression of MS. The reality of MS is that what I stated above, other drugs we take to fight the various symptoms of MS are more dangerous if not more than the ABCR and Tysabri.

Diane said...

WOW, thank you for sharing your experience with such honesty and humor. I recently had a toxic reaction to a DMD that I've been on for 10 years. It sent me to the hospital with 103+ fever and such severe muscle spasms, I thought my bones would break. I knew it was the interferon but my neurologist had "never heard of such a thing." He insisted on injecting me again to see for himself what would happen. I suppose the week in the hospital, three weeks in a rehab facility and $$$$$ in expenses was worth it just to hear a NKN say, "I guess you proved me wrong!" Now, I listen to my body and trust my own instincts. Best to you!