Monday, January 05, 2009

Going Al Naturale... would kind of figure I'd follow a naked clown post with yet another post titled, "Going Al Naturale", huh? But THIS post has nothing to do with nudity and probably isn't that much of a laughing matter.

I don't speak Italian, but this post title would be more suitingly called, "Going immunita naturale", or extremely loosely translated, "going with natural immunity".

I had an appointment today with Dr. She Who Will Not Be Named. It was *supposed* to be my Tysabri follow up appointment. But, since I pretty much decided in December I wasn't going to be TAKING Tysabri any longer, the appointment segued into something else.

If you can recall (and why WOULD you recall, really?), back in December when I saw Dr. SWWNBN about the new onset of burning feet/tingling ankles, there was a question whether or not the Tysabri was holding me anyway in between infusions. And I had just had what felt like a knock down/drag out meeting with Mr. Club Med CEO and cohorts on December 5th regarding Tysabri billing costs. You remember, right? LOL

Well, anyway...I had more than enough time to do some thinking while trying desperately to satisfy my craving for OXYGEN during my respiratory illness over the past few weeks. And the conclusion I came to was this: No more Tysabri.

Here's the deal. I'm just SICK of being SICK and SICK of taking drugs that are supposed to keep me from being SICK, but generally causing me to feel SICK instead. I have been on EVERY disease modifying drug, EXCEPT Rebif and Betaseron. And I've never been on those two because they are reaction to Avonex (development of very high fevers and longer and longer flu-like recovery time of 3-4 days post shot) disqualified me from trying/taking those. I've "been there, done that" when it comes to current standard MS treatments (barring some of the newer experimental drugs and/or bee stings, LDN, and a few others). I'm tired of treating my MS...SICK and tired.

The cessation of Tysabri also came on the heels of cost realization...if I were to continue taking the infusions via Club Med, I would be eating away my maximum life time insurance benefits...which has already surpassed $120,000.00 of my 2 million dollar life time limit. At a little above $92,000.00 a year for the cost of the Tysabri, I would most likely exhaust my benefits BEFORE I exhausted my ability to remain gainfully employed. And that is IF I had no other catastrophic illness/event on top of the annual infusion costs! When weighing this out, the drug simply didn't/doesn't seem worth it to me at this juncture in my life. AND, Club Med has been in no hurry OR support to make any changes in this cost, which I also cannot support or condone by continuing to receive the medication. Call it a "hunger strike Tysabri style" if you will, but I just CANNOT morally justify this expense in my life. Insurance companies (I believe) are soon going to be *third tiering* (moving the medication to a 3rd tiering table, making the patient become responsible for more and more of the cost via copay) this drug anyway, pricing it right out of the market for anyone with a private insurance carrier such as myself. But THIS issue, my friends, is a MUCH larger battle than any waged by dear ol' BRAINCHEESE...and one I'm certainly not up for fighting over.

So...the current *PLAN* of action for me is inaction. Yup...nothing. No medications, barring those I use to deal with symptoms. No major disease modifying drug pulsing through my tissues. I am going "al naturale". I am giving my body a break from the SICKNESS the medications cause. "Que sera sera"...this is my new motto. Sorry to change languages on you from Italian to Spanish, but you get the drift..."whatever will be, will be"...again, very loosely translated (in spite of Doris Day's insistence in her song that this is the literal translation!).

I WAS successful in getting the radiologist's interpretation of my cervical/thoracic spine MRI in December...Ooooo...not so good. NOT MS-wise...just not so good structural-wise. It appears (and I quote) "...moderate to moderately severe, multilevel mid cervical degenerative disk disease...subtle, T2 hyperintense, nonenhancing area in the right cord at superior to mid C4..." Basically (and loosely interpreted in English...I just KEEP switching up languages here. LOL), this says my neck IS falling apart from structural disease, but my cervical lesion is NOT getting any worse and actually looks BETTER than it did 5 years ago when first discovered. Of course, Dr. SWWNBN had to point out, "you neck looks like $#!+"...but, short of surgical intervention (which I am NOT doing, thank you very much), there is little that can be done, other than treating symptoms the structural changes cause. Which, in my case, is MAINLY PAIN! I needed a seven thousand dollar MRI to tell me THAT?!?

So, here we go kids...keep your hands in the moving car at all times and no standing until this ride comes to a complete stop. The BRAINCHEESE world is about to go *rogue*...I haven't been off MS meds in so long, I'm not sure my body will know what to DO with itself for the first few weeks. Oh, sure...there was a 3 month wash out period here and there in between medications, but nothing long term. I'm actually excited about the prospect of NOT having to schedule my life around shots or infusions or SICKNESS or...

Let the ride begin!...




You've got my full support (not that THAT really matters much). I can't yet imagine what it must be like to practically exhaust all choices (except LDN which tons of folks online swear by, or going Swank/Jelinek/MacDougall/Best Bet Diet).

I wish that you didn't have so much pain, though. Wouldn't it be cool to begin feeling the best that you can ever remember after Tysabri (and any other lingering MS meds) get out of your system?

New Year - new approach. Sounds good to me. :)

Jen said...

Good for you, Linda. I'm on Betaseron and although I think it has helped me, I do pay quite a price for being on it: continual and annoying flu-like symptoms every other day, lowered immunity to infections (presently interfering with and making worse my current "bug"), and tons of scar tissue in my arms, butt, thighs, and stomach that hurt to the touch and make me look like a victim of domestic abuse when in a bathing suit.

I'm tired too and if the drawbacks begin to outweigh the benefits, I would consider stopping. I hope I don't have to make that decision for a while.

It's sick that there is a lifetime cap on benefits, when some of these drugs are so expensive. I'm on social security and even Medicare part D is a joke, so I wonder how some of the seniors or people on more meds than me manage. So we instead pay a small fortune for my husband's private, extensive health insurance.

I hope the best for you and your health with this new decision.


pUNKrOCKfairy said...

I gotta tell ya, I'm 6 weeks into my 3 month washout for the Fingolimod trial, and I feel gooooooood! I forgot what it was like to not be hot, run-down, and lumpy all the time. I hope you get some of the same and that it lasts.

Spaz Attack said...

Hey there Brain Splat

YeHaw! Ride those withdrawals cowgirl, ridem!!
You've been struggling since you started Tysabri. Only you know your body,and the financial *!*, so ya gots my support, too.

As being a pain in the neck, er, I mean your pain in your neck, do you think it would help to do exercises to strengthen your neck muscles?

I have no noticible side effects on Copaxone -- I about KILLEd myself, litterally, while on Avonex. I'm struggling with worsening of multiple pain issues I've had since 04. I think the cold weather has helped me figure out how to describe it: It's the feeling one gets when "thawing" out pain of frozen fingers, toes, body, whatever. This snow and freezing temps tightened my muscles more, thus clamping down my veins more, resulting in very slow circulation. I'm numb head to toe anyway so don't notice quickly enough then my fingers freeze. Out in the cold my legs become heavy as led. Thawing when coming inside feels as if I'm going through the bends (think: resurfacing too fast from deep sea dive). Haven't decided if pain/muscle relaxers help or side effects make it worse. Just dunno.

Ouy Vey...Pain, stiffness, fatigue, stupidity -- Did we all visualize it to be part of our life's journey? Is this "our" law of attraction I'm hearing so much about? Is it too late to change my life's journey??? REDo...I CALL A REDO!

At least Dr. SWWNB gots your back -- perhaps she'll help hold your neck together, too?

Oh stay off the Mountain Dew (like that will happen!)

Webster said...

Oh sweetie, sux to be you right now. Head and neck pain is worse than MS, IMO. At least the snow is gone. (Or will be tomorrow, if it isn't completely gone where you are yet.)

I totally support your decision to go "commando" with the MS. [The phrase dates back to at least the middle of the 20th century, when Americans used it to mean "toughening up."

Re: Tysabri - for me - the risks of taking it, let alone the expense, by far outweigh its 'promise' of reduction in relapse rate. If it was a cure, then okay - but for reduced relapses? I don't think so.

Shauna said...

I, too, wish things had gone better for you and echo the other sentiments here. You do what YOU feel you need to do and keep us informed.


Blindbeard said...

I hope that works for you. It scares me to death to think of going off any DMDs, my MS is so aggressive and tearing me down too fast. Too bad your life partner, the Virgin Mary, couldn't work a miracle and get you better insurance. Or you could do what I did: get trapped into marriage by a UPRR employee. They get great insurance, so good one of my doctors told me I have better insurance than them. Other than that I say, go cowgirl! Get a dog, little loggie!

Miss Chris said...

If you want to try Low Dose Naltrexone I have lots of info for you. No side effects, super cheap, and nothing to lose by trying it.

Susan said...

Good idea to just go off the meds and see what happens. I think they are a crap shoot at best anyways...some of them may help some of us some of the time...but I believe the bulk of PWMS stay on meds because they're terrified not to be on something and have been beaten into submission by docs.
My own story includes Copaxone, Avonex, Tysabri and Novantrone. Now I'm giving LDN a go after doing 0 for awhile.
Hope your body appreciates the break!!

harkoo said...

I am real sorry about your cervical problems. We will all be here to support you when you stop your tysabri--you can always go back on it I hope if you need to.

Denver Refashionista said...

Go for it! You're in charge and you might as well try this course and see what happens. Maybe you will feel better once you have an immune system again.


Ugh. My comment does read the why it sounded in my head last night. The lol tone-of-voice and chuckle didn't translate. Sorry. I've gotta be more careful. :)

Creating Wealth said...

Yikes, troubles abound.
Have you taken any alternative routes with managing things? What's your exercise program? What are you eating?. I'm on Rebif, and I tolerate it fairly well- but have noticed night sweats every night. My wife wants to get me a cotton white nightgown and some talcum powder ( just kidding). Does anyone else have this issue that you may have heard of? Good for you on going off Tsabri, I would suggest doing a body fast and cleanse- get all the crap out of your system.
Robert Groth

Bald Ben said...

Right on Cheese! I've been thinking about doing this myself. I feel like I'm just loading up my body with more posion. I maybe helping one problem,(key word maybe) but I am most likely causing other problems with the crap I am injesting. One day I'll have the courage. For now I stand in awe. Good luck.

Merelyme said...

wow! i am really interested to see how this works for you...i have rejected taking any MS drugs thus far and i always wonder if i am making a mistake. you have talked about all of your trials and tribulations with the drugs with such perfect honesty which i totally appreciate. you have paid your dues. i think you are entitled to this medication vacation. will it be permanent do you think?

Bubbie said...

I really hope this proves to be as good a move for you as it has for me. Over a year now off all DMD's and it's been the best year since this damned disease got named in me. Keep me posted.

have myelin said...

Well everyone has pretty much covered the bases so since you mentioned not being able to speak Italian lemme tell you a funny story or at least it was to moi. I was at StarFucks getting me a latte cuz someone gave me a gift card. Okay, I said I wanted a large. He made me a small. I was the only customer so we had time to joke around. I said hey that's not a small!

He said yes it is...I said I paid for a LARGE and *pointing to the large cup* THAT is a large! He laughed and said no, that's a Venti. I said I don't know French so that's the one I ordered!

He did not correct me. Turns out Venti is large in Italian. At least at StarFucks. Dammit.